Ataxia, Did You Know?

Ataxia, Did You Know?

By Dana MauroSociety & CultureScienceEducationPersonal JournalsLife Sciences
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Ataxia, Did You Know? episodes

  • 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
    11 min
  • 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
    11 min
  • 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
    12 min
  • 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
    Yeah http://www.rideforjohn.org/
    Instagram https://www.instagram.com/ataxian_/
    Twitter
    https://twitter.com/AtaxiaFacts
    15 min
  • 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
    …
    32 min
  • 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
    13 min
  • 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
    11 min
  • 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
    32 min
  • 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
    30 min
  • 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
    17 min

About Ataxia, Did You Know?

From the publisher's feed

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…