Name: Ataxia Suport Groups They get me ! by Dana Mauro
Duration: 6 min 1 s
Description: 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.

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/

Did You Know about research

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.

Ataxia Suport Groups  They get me !

Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.

Tips for first time attendees to the Ataxia Conference

#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

Cindy DeMint support Group leader making a different

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 relatives of these participants. Make sure you are taking the correct survey:

PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link

RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link

Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th.

Thank you again for your participation.
Dr Schmahmann

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

Want to be involved in the Ataxian PROM?

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

Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease)

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
…

You signed up for the Sanford Cords registry yet?

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 in the United States.  In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study.  This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country.

Expanded analysis of their data from their first clinical trial of troriluzole in SCA patients.

3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware? 
send in your photo to AtaxiaFacts@msn.com

3 Faces Of Ataxia

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'.

The Cerebellum neurologists call 'the little brain'.

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.

Ataxia Suport Groups They get me !

Dana Mauro

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