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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.
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Maximize your Doctor VisitsStrategies 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 #AtaxiaiTunes: podcast/k...https://itunes.apple.com/us/ Simple Podcast htt…
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iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsAv Dana Mauro
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iTunes: podcast/k...https://itunes.apple.com/us/ SoundCloud https://soundcloud.com/user-536040137... Facebook https://www.facebook.com/ataxihttp:// Website https://ataxia.simplecast.com/episodes Instagram https://www.instagram.com/ataxian_/ Twitter https://twitter.com/AtaxiaFactsAv Ataxia, Did You Know, kNOwATAXIA, Dana Mauro
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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://t…
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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://s…
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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.co…
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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…
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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 #Ata…
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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 hea…
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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…
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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…
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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 Whi…
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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 fr…
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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 MIND…
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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! iT…
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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.o…
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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 ht…
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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…
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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/ Instagr…
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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-driv…
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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…
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#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 http…
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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.o…
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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-536040137-84302417…
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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-536040137-8…
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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 co…
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