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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/

Spinocerebellar Ataxia Awareness and Research Support Group
Our group provides support, education, awareness, and shares personal experiences with each other to learn and become aware of how SCA affects individuals.
www.facebook.com/groups/Ataxiasupportgroup

CANVAS (RFC1) Syndrome Support Group
This group is for people who have been, OR are in the process of being diagnosed with CANVAS, OR are a caregiver to someone with CANVAS (Nurse, Doctor, family member).
www.facebook.com/groups/canvassyndrome

Ataxia Resources and Discussion Group
https://www.facebook.com/groups/1673775846150790

Cannataxia
https://www.facebook.com/groups/2340960579452971

Ataxia Rocks
https://www.facebook.com/groups/864677347039596

Babel Family – Friedreich’s Ataxia Group
https://www.facebook.com/groups/52801039038

Journey Living with Friedrich’s Ataxia (FA)
https://www.facebook.com/groups/49415652743

Ataxia Friends
https://www.facebook.com/groups/210268152337135

Ataxia International
https://www.facebook.com/groups/155098154526932

FA’ers
https://www.facebook.com/groups/IhaveFA

Friedreich’s Ataxia – my illness
https://www.facebook.com/groups/132784610070

ataxia friends
https://www.facebook.com/groups/746918332709343

Ataxians Helping other Ataxians
https://www.facebook.com/groups/ataxianshoa

FA
https://www.facebook.com/groups/158427644197352

Living with Ataxia
https://www.facebook.com/groups/140270585998249

Ataxia y atáxicos
https://www.facebook.com/groups/133060746722115

Ataxia & Fitness
https://www.facebook.com/groups/ataxiafitness

Ataxia Group
https://www.facebook.com/groups/135999194491

Sweet FA – living with Friedreich’s Ataxia
https://www.facebook.com/groups/59557476773

Episodic Ataxia Support Group
https://www.facebook.com/groups/50016438100

Working to Cure Ataxia
https://www.facebook.com/groups/cureataxia

Friedreich’s Ataxia
https://www.facebook.com/groups/15845915511

aTOXia
https://www.facebook.com/groups/aTOXia

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

Wheels Don’t Matter – Step Into My Life
Jaina Hirani was diagnosed with Friedreich’s Ataxia. Her blog explores the many challenges she faced and overcame in the hopes of inspiring others that are in a similar position. 
https://jaina89.wordpress.com/

Ataxianka
Dagmara has Spinocerebellar Ataxia Type 1. On her blog she shares her thoughts and experiences.
https://ataxianka.com/

The Marked for Glory Podcast
Run by Mark Desa
Apple Podcasts – https://podcasts.apple.com/ca/podcast/the-marked-4-glory-podcast-turning-disability-into-ability/id1579085094
Spotify – https://open.spotify.com/show/6Z59FD9ic0XCg4h5fxYbDn

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/

Day Undefined
An online marketplace that curates home goods and technologies based on the insights and experiences of people with disabilities. We focus on finding products according to their use, style, value, and personal recommendations. We are just getting started, so our collections are growing, and we value your input! Is there a particular product, such as a water bottle, kitchen tool, phone charger, or other household item or home technology product, that you love (whether or not it’s considered adaptive) because it makes some aspect of your day easier or more enjoyable? Help us tell others about it by filling out this recommendation form. If you already have a product on our website, leave a review!
 www.dayundefined.com

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.

Order Paperback Book from Amazon

When the Worst Day of Your Life Didn’t Kill You: The Morning After
by Michelle Pinard
Running has always given me peace. It has been my sidekick, my friend, and my release. I have had 43 years of wind in my hair. It’s how I breathe. When The Worst Day Of Your Life Didn’t Kill You is for every reader who finds themselves in a moment where the thought of living another day becomes unbearable. When I was told the news my body was being taken from me, I had to find fresh reasons for living. For those of us who find ourselves facing a life that appears unbearable, let’s take that journey together. There is a morning after.

Order from Amazon

Submit a Community Group or Website

Do you have another site to share? Let us know about it! Please email your request with the url and a few sentences to describe your site to naf@ataxia.org

 

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