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/
MyGene2
MyGene2 is a website which was created as a place for families affected by rare disease to share their health and genetic information in order to connect with other families, clinicians, and researchers. Sharing anonymous health and genetic information broadly allows for improved understanding of the genetic causes of rare diseases and the role of genes in our health. It also allows families to connect with researchers who are studying particular disorders or genes.
https://mygene2.org/MyGene2/
Ataxia Books
Remembering the Ride
by Shirley Swier Jones
“Vernon was twenty-one, handsome, kind, fun-loving and Christian, and he was stealing my heart.” Thus began a love story that would evolve over the next twenty-three years through the blessing of five children and the sadness of living with a tragic, hereditary disease. That disease would continue to impact our family for more than fifty years. This story is a personal one. It is a story of deep sorrow mingled with the joy that comes from family, love, commitment and faith.
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.
Read Our Blog Posts
2019 NAF Funded Research Results
St. Louis Ataxia Support Group Recap – 12.12.20
Winter 2020 Support Group Recaps
Fall 2020 Support Group Meeting Updates
Amanda Simmons
Ataxia Patient Advocacy Organizations Applaud the US Senate for Passing the Bipartisan “National Ataxia Awareness Day of 2020” Resolution
