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 su...
Jan 23, 2019•11 min•Season 2Ep. 3
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
Jan 12, 2019•11 min•Season 2Ep. 2
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 ...
Jan 12, 2019•12 min•Season 2Ep. 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...
Sep 17, 2018•14 min•Season 1Ep. 22
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 …
Sep 14, 2018•31 min•Season 1Ep. 21
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:...
Sep 12, 2018•13 min•Season 1Ep. 20
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...
May 18, 2018•11 min•Season 1Ep. 19
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...
Apr 24, 2018•32 min•Season 1Ep. 18
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 fr...
Apr 22, 2018•29 min•Season 1Ep. 17
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...
Apr 16, 2018•17 min•Season 1Ep. 16
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 w...
Apr 12, 2018•25 min•Season 1Ep. 15
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 relati...
Apr 11, 2018•9 min•Season 1Ep. 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...
Apr 09, 2018•13 min•Season 1Ep. 13
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_/...
Apr 08, 2018•14 min•Season 1Ep. 12
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:...
Apr 06, 2018•11 min•Season 1Ep. 11
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...
Apr 05, 2018•9 min•Season 1Ep. 10
Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.
Mar 23, 2018•6 min•Season 1Ep. 9
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...
Mar 11, 2018•4 min•Season 1Ep. 8
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.
Mar 02, 2018•6 min•Season 1Ep. 7
Dana Mauro: Talks about the importance of a good support system.
Nov 23, 2017•6 min•Season 1Ep. 6
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/
Nov 23, 2017•2 min•Season 1Ep. 5
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
Nov 16, 2017•6 min•Season 1Ep. 4
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:...
Sep 20, 2017•21 min•Season 1Ep. 3
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
Sep 12, 2017•7 min•Season 1Ep. 2
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.
Aug 31, 2017•5 min•Season 1Ep. 1
