Ataxia, Did You Know?

Maximize your Doctor Visits

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 h...

How to maximize the time spent with your doctor

My name is Dana Mauro. My husband has been living with two rare diseases for the last 15 years. In that time, we have had many doctor appointments. My intent today is to share some things that have helped us maximize the time spent with the doctor and leave the appointment with clear next steps #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.s...

Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise

#ThoughtfulTuesday Exercise , Take a step, Stay tune to the end! Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise #kNOwATAXIA MGH Neurology

Dr Jeremy Schmahmann Ataxia patients prevent infection COVID-19

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

Be a part of the Joint Mission Bataan

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SCAR Scale

Feeling alone in your Ataxia diagnosis – finding the right support system is key.

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Making the most out of the first appointment with your neurologist.

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Ataxia neurologists how to prepare

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Spinocerebellar #Ataxia? Biohaven is sponsoring a clinical trial

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How is Ataxia is diagnosed

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What is Friedreich Ataxia

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Today’s topic is Doctor Visits

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What is Hereditary Ataxias? #kNOwATAXIA

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What is a clinical trial

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What is Episodic Ataxia

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What are you eating?

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Patient Registries are essential tools for Ataxia

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Caregivers, Independence is something we all want

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What is Community fundraising

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

Ataxia Awareness Day Senate Resolution

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

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'.

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

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 [email protected]

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.

3 Faces Of Ataxia

3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware? send in your photo to [email protected]

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....

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/AtaxiaFac...

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 pat...

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 Nation...

#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 t...

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...

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

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 W...

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 Neurol...

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 …

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 Facebo...

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

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 h...

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 t...

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

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, ...

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 [email protected]. 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...

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

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_/

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/ata...

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....

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.

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 med...

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.