Ataxia Community Links

It can be hard to connect with other people who have Ataxia. NAF has a number of support groups around the country to help you learn and meet others. There are also lots of great online resources from other members of the Ataxia community. Finding them can be difficult if you don’t know where to look. To make it a bit easier, we started this list! 

These are peer-run groups, blogs, websites, and podcasts from fellow members of the Ataxia community. Do have a good link to share? Send it our way! Use the submission form below to add an Ataxia community resource to this list.

Please note, these groups and sites are not affiliated with NAF. Their content is not reviewed or monitored by NAF staff. 

Ataxia Facebook Groups

Parents of Kids with Ataxia
This group is for parents who have a child who has Ataxia. This is our spot to learn from one another, vent, have fun, and discuss topics important to us!
www.facebook.com/groups/ParentsOfKidsWithAtaxia

SCA14
Exclusively for individuals diagnosed with SCA14 by genetic testing.
www.facebook.com/groups/2195583757438500/

Under 30 with Ataxia
You must have Ataxia yourself and be ages 16-30 to join this group. Parents, spouses, and friends of people with Ataxia aren’t allowed to join the group.
www.facebook.com/groups/Under30withAtaxia/

Ataxia Blogs/Podcasts

Did You Know Podcast
The Did You Know Podcast’s goal is to share reputable Ataxia information that is simple and easy to understand in an effort to educate the public about Ataxia 
www.facebook.com/ataxiadidyouknow

Our Lives, With Ataxia Along For The Ride
A blog that shares stories from people whose lives have been affected by one of the many forms of Ataxia. 
www.scawolfer.blogspot.com

Ataxia Websites

Dentatorbral Pallidoluysian Atrophy (DRPLA)
Community message board for those with DRPLA.
www.rareconnect.org/en/community/dentatorubral-pallidoluysian-atrophy

The Fight Ataxia Project
Support, information, and education for people with any type of Ataxia, their family, friends, caregivers, etc. 
www.fightataxia.org

Kyle Bryant: Shifting Into High Gear
Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA) in 1998, when he was 17 years old. His book is about his legendary trike ride from California to the 50th Annual NAF meeting in Memphis, TN in 2007. 
www.kyleabryant.com

Spinocerebellar Ataxia Type 14
Community message board for those with SCA14.
www.rareconnect.org/en/community/sca14/updates

Spinocerebellar Ataxia Type 29
Community message board for those with SCA29.
www.rareconnect.org/en/community/spinocerebellar-ataxia-type-29

We Are Strong: A True Story of the De Mint Family
Three brothers growing up and leading a normal life in Southern California, unexpectedly find themselves facing an odyssey of challenges when they are all stricken in their teens with a rare and debilitating neurological disease called “Ataxia.” Meet the De Mint family, and learn of their amazing and inspiring journey together.
wearestrongmovie.com/

Submit a Community Group or Website

Do you have another site to share? Let us know about it! Please send us the url and a few sentences to describe your site. 

Provide your contact information in case we have any questions. 

 

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