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 https://www.inst...

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 AtaxiaFacts@gmail.com

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 AtaxiaFacts@msn.com

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....

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...

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 ...

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 Ata...

#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 fam...