https://simplecast.com Ataxia, Did You Know? Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see. Dana Mauro en Thu, 31 Dec 2020 00:36:47 +0000 Fri, 15 Jan 2021 01:23:57 +0000 https://www.knowataxia.com Ataxia, Did You Know? https://image.simplecastcdn.com/images/c530c396-c6ac-49b5-9a7f-877041c79cfd/ad5e42c9-970e-484c-bbe4-e1111b5598ee/3000x3000/4d9c2983-5941-4ce9-b8a6-7418bdaeb1cb.jpg?aid=rss_feed https://www.knowataxia.com episodic Curious, knowledgeable wife of an Ataxian. My mi… Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see. Dana Mauro no https://feeds.simplecast.com/zEjgB2ft ataxia, parkinson’s, ms, awareness, health, rare diseases Dana Mauro danamauro63@msn.com 041c09ea-1b43-469f-8aca-586ee8f16e06 Maximize your Doctor Visits Thu, 31 Dec 2020 00:36:47 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/how-to-maximize-the-time-spent-with-your-doctor-KTaxTbmj Maximize your Doctor Visits Dana Mauro 00:13:00 Maximize your Doctor Visits Strategies to include before your next doctor visit to maximize your appointment time.   An average appointment is 30 - 60 minutes. That’s not a lot of time. In this session you will learn strategies to make the most out of those minutes. #kNOwATAXIA #Ataxia iTunes: podcast/k...https://itunes.apple.com/us/ Simple Podcast https://ataxia.simplecast.com/ Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Maximize your Doctor Visits Strategies to include before your next doctor visit to maximize your appointment time.   An average appointment is 30 - 60 minutes. That’s not a lot of time. In this session you will learn strategies to make the most out of those minutes. #kNOwATAXIA #Ataxia iTunes: podcast/k...https://itunes.apple.com/us/ Simple Podcast https://ataxia.simplecast.com/ Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts did you know, appointments, rare diseases, ataxia facts, dana mauro, ataxia, doctor no full 33 2 2663caef-ed5f-4f39-adc5-29eff405b153 Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise Tue, 5 May 2020 14:15:31 +0000 danamauro63@msn.com (Dr. Jeremy Schmahmann, Dana Mauro) https://knowataxia.com/episodes/dr-jeremy-schmahmann-explains-ataxia-patients-how-important-to-exercise-IdJT4qYH Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise Dr. Jeremy Schmahmann, Dana Mauro 00:04:53 #ThoughtfulTuesday Exercise , Take a step, Stay tune to the end! Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise #kNOwATAXIA MGH Neurology #ThoughtfulTuesday Exercise , Take a step, Stay tune to the end! Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise #kNOwATAXIA MGH Neurology knowataxia, naf, dana mauro, ataxia no full 32 2 9bf7e500-590d-4b68-8ff7-42c62e71fad2 Dr Jeremy Schmahmann Ataxia patients prevent infection COVID-19 Fri, 10 Apr 2020 20:26:03 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/dr-jeremy-schmahmann-ataxia-patients-prevent-infection-covid-19-78WfL1Eu Dr Jeremy Schmahmann Ataxia patients prevent infection COVID-19 Dana Mauro 01:05:09 Dr Jeremy Schmahmann.. is head of the Ataxia Unit at Massachusetts General Hospital in Boston, Massachusetts MINDlink Foundation Ataxia patients: steps to take care of yourself to prevent infection COVID-19 https://youtu.be/c-ic6Wn9m0Q Dr Jeremy Schmahmann.. is head of the Ataxia Unit at Massachusetts General Hospital in Boston, Massachusetts MINDlink Foundation Ataxia patients: steps to take care of yourself to prevent infection COVID-19 https://youtu.be/c-ic6Wn9m0Q no full 31 2 91483397-d816-4df2-9888-fa50882bd2ae Be a part of the Joint Mission Bataan iTunes:  podcast/k...https://itunes.apple.com/us/   


 

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]]> Wed, 26 Feb 2020 00:18:12 +0000 danamauro63@msn.com (Mike De Rosa and Mark Minkin) https://knowataxia.com/episodes/mike-de-rosa-and-mark-minkin-on-the-joint-mission-battan-PffzkZvV iTunes:  podcast/k...https://itunes.apple.com/us/   


 

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]]> Be a part of the Joint Mission Bataan Mike De Rosa and Mark Minkin 00:18:25 Listen in to my conversation with Mike De Rosa and Mark Minkin. Find out how they and other representatives from across the country are raising funds and awareness about Ataxia on March 15th https://ataxia.org/jointmissionbataan/ The Joint Mission Bataan is an exciting opportunity to support the Ataxia community, and veterans, at the same time. The National Ataxia Foundation and many individuals from around the country have committed to hiking 26.2 miles in the New Mexico desert as part of the Bataan Memorial Death March. Be a part of the Joint Mission Bataan- an operation to increase awareness of Ataxia, raise funds, and find a cure. Contributions will go towards fulfilling NAF’s mission of improving the lives of persons affected by Ataxia through support, education, and research. #kNOwATAXIA Nation #thoughtfultuesday Listen in to my conversation with Mike De Rosa and Mark Minkin. Find out how they and other representatives from across the country are raising funds and awareness about Ataxia on March 15th https://ataxia.org/jointmissionbataan/ The Joint Mission Bataan is an exciting opportunity to support the Ataxia community, and veterans, at the same time. The National Ataxia Foundation and many individuals from around the country have committed to hiking 26.2 miles in the New Mexico desert as part of the Bataan Memorial Death March. Be a part of the Joint Mission Bataan- an operation to increase awareness of Ataxia, raise funds, and find a cure. Contributions will go towards fulfilling NAF’s mission of improving the lives of persons affected by Ataxia through support, education, and research. #kNOwATAXIA Nation #thoughtfultuesday knowataxia, ataxia no full 30 2 35d8dcb7-40c1-46d5-91f3-b0ac408e4ba7 SCAR Scale Wed, 12 Feb 2020 01:13:05 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/scar-scale-vfMKNNnj SCAR Scale Dana Mauro 00:24:15 no full 29 2 00287d40-af25-4198-9634-a3f9891c94e9 Feeling alone in your Ataxia diagnosis – finding the right support system is key. iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Wed, 18 Dec 2019 00:12:18 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/feeling-alone-in-your-ataxia-diagnosis-finding-the-right-support-system-is-key-7naGATiy iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Feeling alone in your Ataxia diagnosis – finding the right support system is key. Dana Mauro 00:06:18 jmb2020, knowataxia, ataxia no full 28 2 4605b8b0-bb0f-4b95-8d2a-99e5fb8ff4a0 Making the most out of the first appointment with your neurologist. iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Thu, 14 Nov 2019 00:08:30 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/making-the-most-out-of-the-first-appointment-with-your-neurologist-xbWNzRAc iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Making the most out of the first appointment with your neurologist. Dana Mauro 00:06:21 Making the most out of the first appointment with your neurologist.By Dana Mauro Making the most out of the first appointment with your neurologist.By Dana Mauro knowataxia, neurologist, dana mauro, ataxia no full 27 2 12758fce-9bff-4252-857e-b9f013e74e0d Ataxia neurologists how to prepare iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Tue, 5 Nov 2019 22:44:19 +0000 danamauro63@msn.com (Ataxia, kNOwATAXIA, Dana Mauro, MGH) https://knowataxia.com/episodes/ataxia-neurologists-how-to-prepare-KxnFnJBx iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Ataxia neurologists how to prepare Ataxia, kNOwATAXIA, Dana Mauro, MGH 00:05:01 Taking an active role and advocating for patient needs is important when seeking an Ataxia diagnosis. Begin with a discussion with a primary care physician. However, some physicians may not be familiar with Ataxia because it is a rare disease. If Ataxia is suspected, the primary care physician will likely make a referral to a neurologist. Neurologists will have the expertise needed to confirm a diagnosis and determine the type of Ataxia. Taking an active role and advocating for patient needs is important when seeking an Ataxia diagnosis. Begin with a discussion with a primary care physician. However, some physicians may not be familiar with Ataxia because it is a rare disease. If Ataxia is suspected, the primary care physician will likely make a referral to a neurologist. Neurologists will have the expertise needed to confirm a diagnosis and determine the type of Ataxia. physician, knowataxia, naf, neurologists, dana mauro, ataxia no full 26 2 8a33c51e-e604-42f6-960d-3342ad9c55e8 Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial iTunes:  podcast/k...https://itunes.apple.com/us/   


 

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]]> Sun, 3 Nov 2019 21:08:27 +0000 danamauro63@msn.com (Ataxia, Did You Know, kNOwATAXIA, Dana Mauro) https://knowataxia.com/episodes/spinocerebellar-ataxia-biohaven-is-sponsoring-a-clinical-trial-MsVUxbaH iTunes:  podcast/k...https://itunes.apple.com/us/   


 

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]]> Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial Ataxia, Did You Know, kNOwATAXIA, Dana Mauro 00:10:12 Are you or a loved one living with Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial for an investigational drug to determine if it can impede or improve symptoms of SCA. See if you qualify. Click the link below. www.scatrial.org Are you or a loved one living with Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial for an investigational drug to determine if it can impede or improve symptoms of SCA. See if you qualify. Click the link below. www.scatrial.org knowataxia, biohaven, dana mauro, ataxia no full 25 2 b79a56ca-ab14-449e-aafd-3d3cf5cb693b How is Ataxia is diagnosed iTunes:  podcast/k...https://itunes.apple.com/us/   

 

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]]> Wed, 25 Sep 2019 01:36:02 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/how-is-ataxia-is-diagnosed-SgVBV3Np iTunes:  podcast/k...https://itunes.apple.com/us/   

 

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]]> How is Ataxia is diagnosed Dana Mauro 00:03:23 Ataxia is diagnosed using a combination of strategies that may include medical history, family history, and a complete neurological evaluation. Various blood tests may be performed to rule out other disorders. Genetic blood tests are available for some types of hereditary Ataxia. Ataxia is diagnosed using a combination of strategies that may include medical history, family history, and a complete neurological evaluation. Various blood tests may be performed to rule out other disorders. Genetic blood tests are available for some types of hereditary Ataxia. iaad, knowataxia, what is ataxia, ataxia no full 24 2 84c705cf-a8c1-4831-8cc9-dbad33ed2bd7 What is Friedreich Ataxia iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Mon, 23 Sep 2019 12:41:55 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-is-friedreich-ataxia-GeVZPr7u iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> What is Friedreich Ataxia Dana Mauro 00:02:42 Friedreich Ataxia (FRDA) was named after Nikolaus Friedreich, who first described it in 1863. It was the first form of hereditary Ataxia to be distinguished from other forms of Ataxia. It is caused by an abnormality of a single gene called the Frataxin (FXN) gene. The abnormality can be passed from generation to generation by family members who carry it. Two copies of each gene are inherited; one copy from the mother and one copy from the father. An individual who has one copy of an altered or nonfunctioning FXN gene does not develop any neurological symptoms and is called a carrier. Friedreich Ataxia (FRDA) was named after Nikolaus Friedreich, who first described it in 1863. It was the first form of hereditary Ataxia to be distinguished from other forms of Ataxia. It is caused by an abnormality of a single gene called the Frataxin (FXN) gene. The abnormality can be passed from generation to generation by family members who carry it. Two copies of each gene are inherited; one copy from the mother and one copy from the father. An individual who has one copy of an altered or nonfunctioning FXN gene does not develop any neurological symptoms and is called a carrier. friedreich ataxia, knowataxia, dana mauro, ataxia no full 23 2 a354b2dc-bd96-48fa-94ee-d17c0b9b9448 Today’s topic is Doctor Visits iTunes:  podcast/k...https://itunes.apple.com/us/   

 

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]]> Fri, 20 Sep 2019 19:33:57 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/todays-topic-is-doctor-visits-HuZD4rWI iTunes:  podcast/k...https://itunes.apple.com/us/   

 

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]]> Today’s topic is Doctor Visits Dana Mauro 00:02:00 Today’s topic is Doctor Visits So how many of you can relate to this You show up at the doctor’s office - you are laser focused and ready to hear everything the doctor has to say….. It starts off great and then…………….. Yeah Something happens…… it’s as if the doctor started speaking a foreign language and you really just need a translator There’s so much going on There’s so much running through your head And you walk out of there not remembering a thing That used to happen to us a lot and then we tried something We recorded the doctor visit Most everyone today has a smart phone. There is a recorder on the smart phone. use it. Ask the doctor if he/she minds if you record the appointment - We haven’t had 1 doctor say no yet What it does is it allows you to be in the moment without that anxiety of having to remember everything that was said You can relax - when you get home you can listen to it again, you can stop it, rewind it, play it over and over again if you need to hear something a second or third time You can jot down some notes or questions that you want to ask of your doctor. We’ve learned that it’s too difficult to listen to what’s being said, process all that information, and think of questions all at the same time. What a difference there is when you can refer back to the conversation. So consider this option - Once you start doing it you’ll be amazed at how informational those doctor appointments can be. Today’s topic is Doctor Visits So how many of you can relate to this You show up at the doctor’s office - you are laser focused and ready to hear everything the doctor has to say….. It starts off great and then…………….. Yeah Something happens…… it’s as if the doctor started speaking a foreign language and you really just need a translator There’s so much going on There’s so much running through your head And you walk out of there not remembering a thing That used to happen to us a lot and then we tried something We recorded the doctor visit Most everyone today has a smart phone. There is a recorder on the smart phone. use it. Ask the doctor if he/she minds if you record the appointment - We haven’t had 1 doctor say no yet What it does is it allows you to be in the moment without that anxiety of having to remember everything that was said You can relax - when you get home you can listen to it again, you can stop it, rewind it, play it over and over again if you need to hear something a second or third time You can jot down some notes or questions that you want to ask of your doctor. We’ve learned that it’s too difficult to listen to what’s being said, process all that information, and think of questions all at the same time. What a difference there is when you can refer back to the conversation. So consider this option - Once you start doing it you’ll be amazed at how informational those doctor appointments can be. iaad, knowataxia, what is ataxia, dana mauro, ataxia no full 22 2 2bfd204a-7f0e-4362-a435-a8c9db190c19 What is Hereditary Ataxias? #kNOwATAXIA iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Wed, 18 Sep 2019 23:26:41 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-is-hereditary-ataxias-knowataxia-npRtuBWZ iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> What is Hereditary Ataxias? #kNOwATAXIA Dana Mauro 00:01:49 Hereditary Ataxias are genetic, which means they are caused by a defect in a certain gene that is present from the start of a person’s life, inherited from your parents. Hereditary Ataxias can be divided into those that are dominantly inherited, passing from generation to generation due to a single copy of a defective gene passing from parent to child, and those that are recessively inherited, Ataxia seen in a single generation and is due to two copies of a defective gene; one passed from each parent (who are carriers) to the child. Hereditary Ataxias are genetic, which means they are caused by a defect in a certain gene that is present from the start of a person’s life, inherited from your parents. Hereditary Ataxias can be divided into those that are dominantly inherited, passing from generation to generation due to a single copy of a defective gene passing from parent to child, and those that are recessively inherited, Ataxia seen in a single generation and is due to two copies of a defective gene; one passed from each parent (who are carriers) to the child. iaad, knowataxia, what is ataxia, dana mauro, ataxia no full 21 2 d941b818-da86-4696-b6e0-172c5d9f9740 What is a clinical trial iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Tue, 17 Sep 2019 00:22:33 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-is-a-clinical-trial-oWN_Ripw iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> What is a clinical trial Dana Mauro 00:02:35 Participating in a clinical trial is one way to take an active role in furthering understanding and treatment of Ataxia. It is also a way to get access to new treatment options before they are widely available Participating in a clinical trial is one way to take an active role in furthering understanding and treatment of Ataxia. It is also a way to get access to new treatment options before they are widely available knowataxia, what is ataxia, dana mauro, ataxia no full 20 2 0a1146b8-fa08-4164-be7e-7315a116bab6 What is Episodic Ataxia iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> Sun, 15 Sep 2019 23:40:41 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-is-episodic-ataxia-Ij5dacKR iTunes:  podcast/k...https://itunes.apple.com/us/   

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]]> What is Episodic Ataxia Dana Mauro 00:03:00 Episodic ataxia is a group of related conditions that affect the nervous system and cause problems with movement Episodic ataxia is a group of related conditions that affect the nervous system and cause problems with movement iaad, knowataxia, what is ataxia, dana mauro, ataxia no full 19 2 d0a1b93c-eb18-431a-944e-1e70f90bcf3f What are you eating? iTunes:  podcast/k...https://itunes.apple.com/us/

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]]> Fri, 13 Sep 2019 16:00:09 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-are-you-eating-TKKQQNoW iTunes:  podcast/k...https://itunes.apple.com/us/

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]]> What are you eating? Dana Mauro 00:04:48 What are you eating? There is a direct relationship between what you eat and how you feel. Making better food choices is easier than you think. Listen in as I share my perspective on healthy eating What are you eating? There is a direct relationship between what you eat and how you feel. Making better food choices is easier than you think. Listen in as I share my perspective on healthy eating what ia ataxia, iaad, knowataxia, ataxia no full 18 2 5c4df3b6-f05a-480b-b4ca-bde9c71facee Patient Registries are essential tools for Ataxia iTunes:  podcast/k...https://itunes.apple.com/us/

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]]> Thu, 12 Sep 2019 23:14:57 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/patient-registries-are-essential-tools-for-ataxia-WW4i1vSw iTunes:  podcast/k...https://itunes.apple.com/us/

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Twitter https://twitter.com/AtaxiaFacts

]]> Patient Registries are essential tools for Ataxia Dana Mauro 00:02:12 Patient Registries are essential tools for Ataxia researchers. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers with those who are affected with that disease. If you or a family member are affected by Ataxia or are at risk for Ataxia, we recommend that you sign up on the appropriate patient registry #kNOwATAXIA Patient Registries are essential tools for Ataxia researchers. The purpose of a patient registry is to advance the development of treatments for a disease by connecting researchers with those who are affected with that disease. If you or a family member are affected by Ataxia or are at risk for Ataxia, we recommend that you sign up on the appropriate patient registry #kNOwATAXIA iaad, dana mauro, ataxia, patient registries no full 17 2 04d497ac-4a63-44f1-bb05-bec56b646d65 Caregivers, Independence is something we all want  

AtaxiaFacts@gmail.com

 

iTunes: podcast/k...https://itunes.apple.com/us/

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxihttp:/


 

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Wed, 11 Sep 2019 22:14:55 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/caregivers-independence-is-something-we-all-want-TFjKk4_c  

AtaxiaFacts@gmail.com

 

iTunes: podcast/k...https://itunes.apple.com/us/

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxihttp:/


 

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Caregivers, Independence is something we all want Dana Mauro 00:05:35 Hi kNOwATAXIA Nation. Independence is something we all want. It’s vital to our self worth. Listen in to the podcast directed at caregivers. Why it’s important to allow your loved one to continue doing as much as possible for as long as possible Hi kNOwATAXIA Nation. Independence is something we all want. It’s vital to our self worth. Listen in to the podcast directed at caregivers. Why it’s important to allow your loved one to continue doing as much as possible for as long as possible ataxia knowataxia, iaad, caregivers, what is ataxia, ataxia no full 16 2 3a2b09e6-b710-4e59-af63-0096e3d5b3b1 What is Community fundraising Wed, 11 Sep 2019 00:52:04 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/what-is-community-fundraising-_4uMxaGT What is Community fundraising Dana Mauro 00:02:46 Thousands of families, friends, co-workers, neighbors, and communities come together each year to support NAF’s fight to improve the lives of people affected by Ataxia and their families. National Ataxia Foundation Thousands of families, friends, co-workers, neighbors, and communities come together each year to support NAF’s fight to improve the lives of people affected by Ataxia and their families. National Ataxia Foundation national ataxia foundation, knowataxia, what is ataxia, dana mauro, ataxia no full 15 2 7b1ee7e1-c9c2-4724-9d50-785291c88848 Ataxia Awareness Day Senate Resolution Mon, 9 Sep 2019 21:32:25 +0000 danamauro63@msn.com (Ataxia, kNOwATAXIA, Dana Mauro) https://knowataxia.com/episodes/ataxia-awareness-day-senate-resolution-KQGMxQdV Ataxia Awareness Day Senate Resolution Ataxia, kNOwATAXIA, Dana Mauro 00:02:09 I would just like to thank everyone involved in advocating for the National Ataxia Awareness Day Senate Resolution. We can accomplish big things when we are united. #kNOwATAXIA National Ataxia Foundation #Ataxia MINDlink Foundation I would just like to thank everyone involved in advocating for the National Ataxia Awareness Day Senate Resolution. We can accomplish big things when we are united. #kNOwATAXIA National Ataxia Foundation #Ataxia MINDlink Foundation iaad, knowataxia, what is ataxia, ataxia, ataxia foundation, hill day no full 14 2 tag:soundcloud,2010:tracks/678268098 The Cerebellum neurologists call 'the little brain'. Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'.

]]> Sun, 8 Sep 2019 23:58:46 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/the-cerebellum-neurologists-call-the-little-brain-KP3U2CYb Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'.

]]> The Cerebellum neurologists call 'the little brain'. Dana Mauro 00:01:44 Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'. Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'. no full 13 2 tag:soundcloud,2010:tracks/676966620 Exercising, What are you waiting for Exercise can be effective in the treatment and management of a number of chronic health conditions.

iTunes: podcast/k...https://itunes.apple.com/us/
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxihttp://

Website
www.rideforjohn.org/adidyou...

Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Fri, 6 Sep 2019 00:21:45 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/exercising-what-are-you-waiting-for-ks6H7_bG Exercise can be effective in the treatment and management of a number of chronic health conditions.

iTunes: podcast/k...https://itunes.apple.com/us/
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxihttp://

Website
www.rideforjohn.org/adidyou...

Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Exercising, What are you waiting for Dana Mauro 00:02:56 Exercise can be effective in the treatment and management of a number of chronic health conditions. iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website www.rideforjohn.org/adidyou... Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Exercise can be effective in the treatment and management of a number of chronic health conditions. iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website www.rideforjohn.org/adidyou... Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 12 2 tag:soundcloud,2010:tracks/676462820 National Ataxia Foundation established in 1957 NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families.
#kNOwATAXIA #IAAD2019 National Ataxia Foundation
Email your photo to AtaxiaFacts@gmail.com

]]> Thu, 5 Sep 2019 00:14:22 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/national-ataxia-foundation-established-in-1957-3LwokDWk NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families.
#kNOwATAXIA #IAAD2019 National Ataxia Foundation
Email your photo to AtaxiaFacts@gmail.com

]]> National Ataxia Foundation established in 1957 Dana Mauro 00:02:26 NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families. #kNOwATAXIA #IAAD2019 National Ataxia Foundation Email your photo to AtaxiaFacts@gmail.com NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families. #kNOwATAXIA #IAAD2019 National Ataxia Foundation Email your photo to AtaxiaFacts@gmail.com no full 11 2 tag:soundcloud,2010:tracks/676460564 Massachusetts General Hospital (MGH) Ataxia Unit The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions.

]]> Thu, 5 Sep 2019 00:07:04 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/massachusetts-general-hospital-mgh-ataxia-unit-JLCj_P_y The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions.

]]> Massachusetts General Hospital (MGH) Ataxia Unit Dana Mauro 00:02:23 The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions. The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions. no full 10 2 tag:soundcloud,2010:tracks/675496037 3 Faces Of Ataxia 3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware?
send in your photo to AtaxiaFacts@msn.com

]]> Tue, 3 Sep 2019 12:36:44 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/3-faces-of-ataxia-9NwoewWK 3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware?
send in your photo to AtaxiaFacts@msn.com

]]> 3 Faces Of Ataxia Dana Mauro 00:02:30 3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware? send in your photo to AtaxiaFacts@msn.com 3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware? send in your photo to AtaxiaFacts@msn.com no full 9 2 tag:soundcloud,2010:tracks/616253928 Cameryn Cobb An inspirational young advocate for Ataxia I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference.
MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Sun, 5 May 2019 23:56:57 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/cameryn-cobb-an-inspirational-young-advocate-for-ataxia-MgZ4TTgr I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference.
MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Cameryn Cobb An inspirational young advocate for Ataxia Dana Mauro 00:08:39 I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference. MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference. MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 8 2 tag:soundcloud,2010:tracks/610161597 Lauren Sormani An inspirational young advocate for Ataxia a Rare Disease Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Tue, 23 Apr 2019 11:18:01 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/lauren-sormani-an-inspirational-young-advocate-for-ataxia-a-rare-disease-OaOcxJSP Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Lauren Sormani An inspirational young advocate for Ataxia a Rare Disease Dana Mauro 00:08:17 Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 7 2 tag:soundcloud,2010:tracks/605828058 Expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This clinical trial was the first registrational trial in SCA patients in the United States. In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study. This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country.

]]> Sun, 14 Apr 2019 13:25:56 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/expanded-analysis-of-their-data-from-their-first-clinical-trial-of-troriluzole-in-sca-patients-izA9BdwL This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This clinical trial was the first registrational trial in SCA patients in the United States. In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study. This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country.

]]> Expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. Dana Mauro 00:23:25 This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This clinical trial was the first registrational trial in SCA patients in the United States. In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study. This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country. This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This clinical trial was the first registrational trial in SCA patients in the United States. In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study. This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country. no full 6 2 tag:soundcloud,2010:tracks/604091988 Andrew Rosen Announced as Executive Director For National Ataxia Foundation Andrew Rosen Announced as Executive Director #kNOwATAXIA
"I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ataxia. It is a pivotal time for the Ataxia community, and I will be focused on accelerating NAF's growth in the coming years." Andrew Rosen
National Ataxia Foundation
#2019AAC
iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Wed, 10 Apr 2019 21:31:33 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/andrew-rosen-announced-as-executive-director-for-national-ataxia-foundation-3F7xuFt0 Andrew Rosen Announced as Executive Director #kNOwATAXIA
"I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ataxia. It is a pivotal time for the Ataxia community, and I will be focused on accelerating NAF's growth in the coming years." Andrew Rosen
National Ataxia Foundation
#2019AAC
iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Andrew Rosen Announced as Executive Director For National Ataxia Foundation Dana Mauro 00:08:23 Andrew Rosen Announced as Executive Director #kNOwATAXIA "I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ataxia. It is a pivotal time for the Ataxia community, and I will be focused on accelerating NAF's growth in the coming years." Andrew Rosen National Ataxia Foundation #2019AAC iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Andrew Rosen Announced as Executive Director #kNOwATAXIA "I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ataxia. It is a pivotal time for the Ataxia community, and I will be focused on accelerating NAF's growth in the coming years." Andrew Rosen National Ataxia Foundation #2019AAC iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 5 2 tag:soundcloud,2010:tracks/603640005 #26 Kyle Bryant: Shifting Into High Gear at #2019AAC Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference.
Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it.
I think you’ll really enjoy hearing Kyle’s story. We discuss the rollercoaster of emotions experienced with the diagnosis of a rare disease, the impact this diagnosis has on the family, the importance of becoming an expert in that disease, the road to acceptance (not always a straight line) and the realization that your involvement can make an impact.
Please enjoy and let me know your thoughts in the comments below.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Wed, 10 Apr 2019 01:06:16 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/26-kyle-bryant-shifting-into-high-gear-at-2019aac-iEOLQ8Z2 Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference.
Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it.
I think you’ll really enjoy hearing Kyle’s story. We discuss the rollercoaster of emotions experienced with the diagnosis of a rare disease, the impact this diagnosis has on the family, the importance of becoming an expert in that disease, the road to acceptance (not always a straight line) and the realization that your involvement can make an impact.
Please enjoy and let me know your thoughts in the comments below.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> #26 Kyle Bryant: Shifting Into High Gear at #2019AAC Dana Mauro 00:24:23 Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference. Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it. I think you’ll really enjoy hearing Kyle’s story. We discuss the rollercoaster of emotions experienced with the diagnosis of a rare disease, the impact this diagnosis has on the family, the importance of becoming an expert in that disease, the road to acceptance (not always a straight line) and the realization that your involvement can make an impact. Please enjoy and let me know your thoughts in the comments below. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference. Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it. I think you’ll really enjoy hearing Kyle’s story. We discuss the rollercoaster of emotions experienced with the diagnosis of a rare disease, the impact this diagnosis has on the family, the importance of becoming an expert in that disease, the road to acceptance (not always a straight line) and the realization that your involvement can make an impact. Please enjoy and let me know your thoughts in the comments below. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 4 2 tag:soundcloud,2010:tracks/563197947 Joel Sutherland, the Development Director for the National Ataxia Foundation Hi kNOwATAXIA Nation -

In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more.

I plan to feature a coffee talk with Joel every month to keep you up to date on these initiatives and others.

Enjoy the podcast and if you haven’t already, subscribe to the channel to make sure you don’t miss out.

www.Ataxia.org

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Wed, 23 Jan 2019 01:44:15 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/joel-sutherland-the-development-director-for-the-national-ataxia-foundation-ufRki6x1 Hi kNOwATAXIA Nation -

In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more.

I plan to feature a coffee talk with Joel every month to keep you up to date on these initiatives and others.

Enjoy the podcast and if you haven’t already, subscribe to the channel to make sure you don’t miss out.

www.Ataxia.org

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Joel Sutherland, the Development Director for the National Ataxia Foundation Dana Mauro 00:10:42 Hi kNOwATAXIA Nation - In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more. I plan to feature a coffee talk with Joel every month to keep you up to date on these initiatives and others. Enjoy the podcast and if you haven’t already, subscribe to the channel to make sure you don’t miss out. www.Ataxia.org iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts Hi kNOwATAXIA Nation - In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more. I plan to feature a coffee talk with Joel every month to keep you up to date on these initiatives and others. Enjoy the podcast and if you haven’t already, subscribe to the channel to make sure you don’t miss out. www.Ataxia.org iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 3 2 tag:soundcloud,2010:tracks/557713881 Ataxian preps for the holidays How an Ataxian preps for the holidays and finds the joy in the season.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Sat, 12 Jan 2019 01:12:51 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/ataxian-preps-for-the-holidays-LXohN7ou How an Ataxian preps for the holidays and finds the joy in the season.

iTunes https://itunes.apple.com/us/podcast/k...
SoundCloud https://soundcloud.com/user-536040137...
Facebook https://www.facebook.com/ataxiadidyou...
Website http://www.rideforjohn.org/
Instagram https://www.instagram.com/ataxian_/
Twitter https://twitter.com/AtaxiaFacts

]]> Ataxian preps for the holidays Dana Mauro 00:11:00 How an Ataxian preps for the holidays and finds the joy in the season. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts How an Ataxian preps for the holidays and finds the joy in the season. iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 2 2 tag:soundcloud,2010:tracks/557706144 Joint Mission Bataan Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia.

The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the White Sands Missile Range in New Mexico. The march is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II.

There are tons of different ways to get involved! You can create your own social media posts, share NAF's posts, start a fundraising team, or contribute to the Mission yourself. We want to spread the word about Mike, Ed, and the fight against Ataxia
#kNOwATAXIA #JMB #JMB1 #JMB2 #JMB8 National Ataxia Foundation
https://app.mobilecause.com/vf/JMB

]]> Sat, 12 Jan 2019 00:52:05 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/joint-mission-bataan-u9pFJaIE Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia.

The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the White Sands Missile Range in New Mexico. The march is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II.

There are tons of different ways to get involved! You can create your own social media posts, share NAF's posts, start a fundraising team, or contribute to the Mission yourself. We want to spread the word about Mike, Ed, and the fight against Ataxia
#kNOwATAXIA #JMB #JMB1 #JMB2 #JMB8 National Ataxia Foundation
https://app.mobilecause.com/vf/JMB

]]> Joint Mission Bataan Dana Mauro 00:11:53 Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia. The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the White Sands Missile Range in New Mexico. The march is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II. There are tons of different ways to get involved! You can create your own social media posts, share NAF's posts, start a fundraising team, or contribute to the Mission yourself. We want to spread the word about Mike, Ed, and the fight against Ataxia #kNOwATAXIA #JMB #JMB1 #JMB2 #JMB8 National Ataxia Foundation https://app.mobilecause.com/vf/JMB Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia. The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the White Sands Missile Range in New Mexico. The march is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II. There are tons of different ways to get involved! You can create your own social media posts, share NAF's posts, start a fundraising team, or contribute to the Mission yourself. We want to spread the word about Mike, Ed, and the fight against Ataxia #kNOwATAXIA #JMB #JMB1 #JMB2 #JMB8 National Ataxia Foundation https://app.mobilecause.com/vf/JMB no full 1 2 tag:soundcloud,2010:tracks/500911746 Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. Part 1 PART 1 of 2

Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live from the 11th New England walk and roll in Bristol Rhode Island.
@Biohaven @mindlink @naf_ataxia

Jeremy D. Schmahmann, MDProfessor of Neurology, Harvard Medical SchoolFounding Director, Ataxia UnitCognitive Behavioral Neurology Unit Director, Laboratory for Neuroanatomy and Cerebellar NeurobiologyDepartment of Neurology, Massachusetts General Hospital

Melissa Wolfe Beiner, MD
Biohaven Pharmaceuticals
Assistant Director of Research and Development

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Mon, 17 Sep 2018 00:41:12 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/dr-schmahmann-and-melissa-biener-sit-down-with-did-you-know-to-talk-ataxia-part-1-JdbGXqYv PART 1 of 2

Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live from the 11th New England walk and roll in Bristol Rhode Island.
@Biohaven @mindlink @naf_ataxia

Jeremy D. Schmahmann, MDProfessor of Neurology, Harvard Medical SchoolFounding Director, Ataxia UnitCognitive Behavioral Neurology Unit Director, Laboratory for Neuroanatomy and Cerebellar NeurobiologyDepartment of Neurology, Massachusetts General Hospital

Melissa Wolfe Beiner, MD
Biohaven Pharmaceuticals
Assistant Director of Research and Development

iTunes https://itunes.apple.com/us/podcast/k...

SoundCloud https://soundcloud.com/user-536040137...

Facebook https://www.facebook.com/ataxiadidyou...

Website http://www.rideforjohn.org/

Instagram https://www.instagram.com/ataxian_/

Twitter https://twitter.com/AtaxiaFacts

]]> Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. Part 1 Dana Mauro 00:14:13 PART 1 of 2 Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live from the 11th New England walk and roll in Bristol Rhode Island. @Biohaven @mindlink @naf_ataxia Jeremy D. Schmahmann, MDProfessor of Neurology, Harvard Medical SchoolFounding Director, Ataxia UnitCognitive Behavioral Neurology Unit Director, Laboratory for Neuroanatomy and Cerebellar NeurobiologyDepartment of Neurology, Massachusetts General Hospital Melissa Wolfe Beiner, MD Biohaven Pharmaceuticals Assistant Director of Research and Development iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website Yeah http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts PART 1 of 2 Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live from the 11th New England walk and roll in Bristol Rhode Island. @Biohaven @mindlink @naf_ataxia Jeremy D. Schmahmann, MDProfessor of Neurology, Harvard Medical SchoolFounding Director, Ataxia UnitCognitive Behavioral Neurology Unit Director, Laboratory for Neuroanatomy and Cerebellar NeurobiologyDepartment of Neurology, Massachusetts General Hospital Melissa Wolfe Beiner, MD Biohaven Pharmaceuticals Assistant Director of Research and Development iTunes https://itunes.apple.com/us/podcast/k... SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxiadidyou... Website Yeah http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFacts no full 22 1 tag:soundcloud,2010:tracks/499860453 You signed up for the Sanford Cords registry yet? You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MINDlink Foundation Biohaven Pharmaceuticals MGH Neurology
…

]]> Fri, 14 Sep 2018 15:20:38 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/you-signed-up-for-the-sanford-cords-registry-yet-ybqKcfyq You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MINDlink Foundation Biohaven Pharmaceuticals MGH Neurology
…

]]> You signed up for the Sanford Cords registry yet? Dana Mauro 00:31:04 You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MINDlink Foundation Biohaven Pharmaceuticals MGH Neurology … You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MINDlink Foundation Biohaven Pharmaceuticals MGH Neurology … no full 21 1 tag:soundcloud,2010:tracks/499050999 Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational!

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Wed, 12 Sep 2018 21:05:48 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/azorean-pride-team-raises-funds-and-awareness-of-sca3-machado-joseph-disease-uEtVmHQM Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational!

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) Dana Mauro 00:12:33 Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational! iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational! iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 20 1 tag:soundcloud,2010:tracks/445666299 Kara Eichelraut - patient advocate for Reata Pharmaceutical Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Fri, 18 May 2018 03:34:17 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/kara-eichelraut-patient-advocate-for-reata-pharmaceutical-o7NanlF1 Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Kara Eichelraut - patient advocate for Reata Pharmaceutical Dana Mauro 00:10:32 Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 19 1 tag:soundcloud,2010:tracks/434629506 Cory Hannan explains the life of an Ataxian in Latin America with Dana Mauro Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Tue, 24 Apr 2018 20:44:28 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/cory-hannan-explains-the-life-of-an-ataxian-in-latin-america-with-dana-mauro-lHv_kSIq Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Cory Hannan explains the life of an Ataxian in Latin America with Dana Mauro Dana Mauro 00:31:57 Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 18 1 tag:soundcloud,2010:tracks/433428042 Up close and personal with @KyleaBryant Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey.
@ataxiadidyouknow

About the Movie

https://itunes.apple.com/us/movie/the-ataxian/id1336806410

The Ataxian examines the life of Kyle Bryant, a man diagnosed with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia. Despite being unable to walk, Kyle, along with a team of friends, attempt the most grueling bicycle race in the world—The Race Across America. Kyle’s determination and unbreakable spirit carry them through sweeping landscapes and a life-changing cross-country trip.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Sun, 22 Apr 2018 12:10:51 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/up-close-and-personal-with-kyleabryant-XVKmayWs Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey.
@ataxiadidyouknow

About the Movie

https://itunes.apple.com/us/movie/the-ataxian/id1336806410

The Ataxian examines the life of Kyle Bryant, a man diagnosed with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia. Despite being unable to walk, Kyle, along with a team of friends, attempt the most grueling bicycle race in the world—The Race Across America. Kyle’s determination and unbreakable spirit carry them through sweeping landscapes and a life-changing cross-country trip.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Up close and personal with @KyleaBryant Dana Mauro 00:29:29 Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey. @ataxiadidyouknow About the Movie https://itunes.apple.com/us/movie/the-ataxian/id1336806410 The Ataxian examines the life of Kyle Bryant, a man diagnosed with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia. Despite being unable to walk, Kyle, along with a team of friends, attempt the most grueling bicycle race in the world—The Race Across America. Kyle’s determination and unbreakable spirit carry them through sweeping landscapes and a life-changing cross-country trip. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey. @ataxiadidyouknow About the Movie https://itunes.apple.com/us/movie/the-ataxian/id1336806410 The Ataxian examines the life of Kyle Bryant, a man diagnosed with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia. Despite being unable to walk, Kyle, along with a team of friends, attempt the most grueling bicycle race in the world—The Race Across America. Kyle’s determination and unbreakable spirit carry them through sweeping landscapes and a life-changing cross-country trip. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 17 1 tag:soundcloud,2010:tracks/430258401 Do you know what Schmahmann’s syndrome is? Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Mon, 16 Apr 2018 00:09:25 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/do-you-know-what-schmahmanns-syndrome-is-37b7CVfp Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Do you know what Schmahmann’s syndrome is? Dana Mauro 00:16:58 Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 16 1 tag:soundcloud,2010:tracks/428836467 Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Thu, 12 Apr 2018 20:43:28 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/alan-thomas-is-a-patient-engagement-advocate-for-rare-diseases-in-general-and-ataxia-J0NDRP9q Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet.

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia Dana Mauro 00:25:03 Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet. iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 15 1 tag:soundcloud,2010:tracks/427928982 Want to be involved in the Ataxian PROM? Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved.

Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)!

If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey:

PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link

RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link

Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th.

Thank you again for your participation.
Dr Schmahmann

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Wed, 11 Apr 2018 00:22:46 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/want-to-be-involved-in-the-ataxian-prom-OnkpBg_3 Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved.

Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)!

If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey:

PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link

RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link

Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th.

Thank you again for your participation.
Dr Schmahmann

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Want to be involved in the Ataxian PROM? Dana Mauro 00:09:27 Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved. Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)! If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey: PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th. Thank you again for your participation. Dr Schmahmann iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved. Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)! If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey: PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th. Thank you again for your participation. Dr Schmahmann iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 14 1 tag:soundcloud,2010:tracks/427365936 Cindy DeMint support Group leader making a different #DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Mon, 9 Apr 2018 21:48:57 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/cindy-demint-support-group-leader-making-a-different-lfHazWmH #DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Cindy DeMint support Group leader making a different Dana Mauro 00:13:14 #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 13 1 tag:soundcloud,2010:tracks/426439062 Joel Sutherland with DYK Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
itunes.apple.com/us/podcast/know-…/id1312495222?mt

SoundCloud
@user-536040137-843024175

Facebook
www.facebook.com/ataxiadidyouknow/

Website
www.rideforjohn.org/

Instagram
www.instagram.com/ataxian_/

]]> Sun, 8 Apr 2018 03:38:31 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/joel-sutherland-with-dyk-dBiL77hT Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
itunes.apple.com/us/podcast/know-…/id1312495222?mt

SoundCloud
@user-536040137-843024175

Facebook
www.facebook.com/ataxiadidyouknow/

Website
www.rideforjohn.org/

Instagram
www.instagram.com/ataxian_/

]]> Joel Sutherland with DYK Dana Mauro 00:14:24 Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes itunes.apple.com/us/podcast/know-…/id1312495222?mt SoundCloud @user-536040137-843024175 Facebook www.facebook.com/ataxiadidyouknow/ Website www.rideforjohn.org/ Instagram www.instagram.com/ataxian_/ Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes itunes.apple.com/us/podcast/know-…/id1312495222?mt SoundCloud @user-536040137-843024175 Facebook www.facebook.com/ataxiadidyouknow/ Website www.rideforjohn.org/ Instagram www.instagram.com/ataxian_/ no full 12 1 tag:soundcloud,2010:tracks/425536158 Megan Kaiser discovering latest research. Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Fri, 6 Apr 2018 03:38:30 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/megan-kaiser-discovering-latest-research-e1OWWrgz Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Megan Kaiser discovering latest research. Dana Mauro 00:10:30 Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 11 1 tag:soundcloud,2010:tracks/425052645 Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Thu, 5 Apr 2018 05:36:58 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/harry-orr-about-discovering-the-first-ataxia-gene-and-his-latest-research-live-at-2018aac-Kkjfys_0 Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information
#StumbledontoAtaxia
#Ataxia
#IAAD2018
#DYK

iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud
https://soundcloud.com/user-536040137-843024175

Facebook
https://www.facebook.com/ataxiadidyouknow/

Website
http://www.rideforjohn.org/

Instagram
https://www.instagram.com/ataxian_/

Twitter
https://twitter.com/johnnyjots

]]> Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC Dana Mauro 00:08:54 Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC Podcast Show Notes #DidYouKnow Ataxia? Where to go to get reputable Ataxia information #StumbledontoAtaxia #Ataxia #IAAD2018 #DYK iTunes https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt SoundCloud https://soundcloud.com/user-536040137-843024175 Facebook https://www.facebook.com/ataxiadidyouknow/ Website http://www.rideforjohn.org/ Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/johnnyjots no full 10 1 tag:soundcloud,2010:tracks/418238916 Tips for first time attendees to the Ataxia Conference Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.

]]> Fri, 23 Mar 2018 12:29:37 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/tips-for-first-time-attendees-to-the-ataxia-conference-FPWYmyy4 Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.

]]> Tips for first time attendees to the Ataxia Conference Dana Mauro 00:05:46 Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference. Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference. no full 9 1 tag:soundcloud,2010:tracks/412002702 Keeping a Medical Binder So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos

]]> Sun, 11 Mar 2018 13:44:50 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/keeping-a-medical-binder-kcm9BvVF So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos

]]> Keeping a Medical Binder Dana Mauro 00:04:06 So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos no full 8 1 tag:soundcloud,2010:tracks/407763936 Ataxia Suport Groups They get me ! Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.

]]> Fri, 2 Mar 2018 21:07:09 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/ataxia-suport-groups-they-get-me-TEqdafM8 Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.

]]> Ataxia Suport Groups They get me ! Dana Mauro 00:06:02 Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see. Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see. no full 7 1 tag:soundcloud,2010:tracks/359875829 Did You Know Suport Groups are extended family and friends Dana Mauro: Talks about the importance of a good support system.

]]> Thu, 23 Nov 2017 14:43:39 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-suport-groups-are-extended-family-and-friends-9h7gfAwz Dana Mauro: Talks about the importance of a good support system.

]]> Did You Know Suport Groups are extended family and friends Dana Mauro 00:05:41 Dana Mauro: Talks about the importance of a good support system. Dana Mauro: Talks about the importance of a good support system. no full 6 1 tag:soundcloud,2010:tracks/359650670 Did You Know about research Research is at a pivotal time for Ataxia – with one medication in clinical trial and more in the pipeline. We received 84 applications for Ataxia research grants this year! Work with us to get as many of them funded as possible. We want to give researchers the support that they need, so that they can look for the answers that we need. Join NAF’s 2017 Research Drive!
Make a contribution today
https://ataxia.donorpages.com/2017ResearchDrive/

]]> Thu, 23 Nov 2017 00:21:57 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-about-research-lnI5h2gG Research is at a pivotal time for Ataxia – with one medication in clinical trial and more in the pipeline. We received 84 applications for Ataxia research grants this year! Work with us to get as many of them funded as possible. We want to give researchers the support that they need, so that they can look for the answers that we need. Join NAF’s 2017 Research Drive!
Make a contribution today
https://ataxia.donorpages.com/2017ResearchDrive/

]]> Did You Know about research Dana Mauro 00:01:37 Research is at a pivotal time for Ataxia – with one medication in clinical trial and more in the pipeline. We received 84 applications for Ataxia research grants this year! Work with us to get as many of them funded as possible. We want to give researchers the support that they need, so that they can look for the answers that we need. Join NAF’s 2017 Research Drive! Make a contribution today https://ataxia.donorpages.com/2017ResearchDrive/ Research is at a pivotal time for Ataxia – with one medication in clinical trial and more in the pipeline. We received 84 applications for Ataxia research grants this year! Work with us to get as many of them funded as possible. We want to give researchers the support that they need, so that they can look for the answers that we need. Join NAF’s 2017 Research Drive! Make a contribution today https://ataxia.donorpages.com/2017ResearchDrive/ no full 5 1 tag:soundcloud,2010:tracks/356834747 Did You Know ? National Ataxia Foundation believes that this type Dana Mauro talks about:
National Ataxia Foundation believes that this type of request for study subjects will be made in the future for many, and hopefully, all forms of ataxia

]]> Thu, 16 Nov 2017 22:37:41 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-national-ataxia-foundation-believes-that-this-type-4_0zz6_P Dana Mauro talks about:
National Ataxia Foundation believes that this type of request for study subjects will be made in the future for many, and hopefully, all forms of ataxia

]]> Did You Know ? National Ataxia Foundation believes that this type Dana Mauro 00:06:09 Dana Mauro talks about: National Ataxia Foundation believes that this type of request for study subjects will be made in the future for many, and hopefully, all forms of ataxia Dana Mauro talks about: National Ataxia Foundation believes that this type of request for study subjects will be made in the future for many, and hopefully, all forms of ataxia no full 4 1 tag:soundcloud,2010:tracks/343237134 Did You Know? invisible aspects of Ataxia what comes to mind when you think of the invisible aspects of Ataxia:
Fatigue
Guilt
Difficulty maintaining relationships
Difficulty multitasking and keeping track of things
Emotions
Overstimulation
Fatigue:
Exhausted – need to rest frequently during the day – feel guilty
Live by the clock – prioritize your energy
Speech not understood; exhausting to repeat myself
Eating is exhausting – takes a lot of energy not to choke
Use assistive devices to:

]]> Wed, 20 Sep 2017 15:08:25 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-invisible-aspects-of-ataxia-GM2LPVq7 what comes to mind when you think of the invisible aspects of Ataxia:
Fatigue
Guilt
Difficulty maintaining relationships
Difficulty multitasking and keeping track of things
Emotions
Overstimulation
Fatigue:
Exhausted – need to rest frequently during the day – feel guilty
Live by the clock – prioritize your energy
Speech not understood; exhausting to repeat myself
Eating is exhausting – takes a lot of energy not to choke
Use assistive devices to:

]]> Did You Know? invisible aspects of Ataxia Dana Mauro 00:21:09 what comes to mind when you think of the invisible aspects of Ataxia: Fatigue Guilt Difficulty maintaining relationships Difficulty multitasking and keeping track of things Emotions Overstimulation Fatigue: Exhausted – need to rest frequently during the day – feel guilty Live by the clock – prioritize your energy Speech not understood; exhausting to repeat myself Eating is exhausting – takes a lot of energy not to choke Use assistive devices to: what comes to mind when you think of the invisible aspects of Ataxia: Fatigue Guilt Difficulty maintaining relationships Difficulty multitasking and keeping track of things Emotions Overstimulation Fatigue: Exhausted – need to rest frequently during the day – feel guilty Live by the clock – prioritize your energy Speech not understood; exhausting to repeat myself Eating is exhausting – takes a lot of energy not to choke Use assistive devices to: no full 3 1 tag:soundcloud,2010:tracks/342082090 Did You Know ? Annual Ataxia Conference (005) Did You Know ? Annual Ataxia Conference (005)
NAF coordinates the world’s largest annual Ataxia gathering – the Annual Ataxia Conference (AAC). For three days, conference attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference

]]> Tue, 12 Sep 2017 20:31:34 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-annual-ataxia-conference-005-Yh38TIxL Did You Know ? Annual Ataxia Conference (005)
NAF coordinates the world’s largest annual Ataxia gathering – the Annual Ataxia Conference (AAC). For three days, conference attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference

]]> Did You Know ? Annual Ataxia Conference (005) Dana Mauro 00:06:37 Did You Know ? Annual Ataxia Conference (005) NAF coordinates the world’s largest annual Ataxia gathering – the Annual Ataxia Conference (AAC). For three days, conference attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference Did You Know ? Annual Ataxia Conference (005) NAF coordinates the world’s largest annual Ataxia gathering – the Annual Ataxia Conference (AAC). For three days, conference attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference no full 2 1 tag:soundcloud,2010:tracks/340305974 Did You Know Podcast - Episode One What is Ataxia? Did you know this? This is an Ataxia Awareness campaign. Please tune in daily for a new fact to share with friends and family.

]]> Thu, 31 Aug 2017 00:00:00 +0000 danamauro63@msn.com (Dana Mauro) https://knowataxia.com/episodes/did-you-know-podcast-episode-one-FOAClVqf What is Ataxia? Did you know this? This is an Ataxia Awareness campaign. Please tune in daily for a new fact to share with friends and family.

]]> Did You Know Podcast - Episode One Dana Mauro 00:04:40 What is Ataxia? Did you know this? This is an Ataxia Awareness campaign. Please tune in daily for a new fact to share with friends and family. What is Ataxia? Did you know this? This is an Ataxia Awareness campaign. Please tune in daily for a new fact to share with friends and family. no full 1 1