RESOURCES FOR PEOPLE RECENTLY DIAGNOSED WITH FRIEDREICH’S ATAXIA
Newly Diagnosed
A diagnosis of Friedreich’s ataxia (FA) ushers in a wide array of emotions and life changes that impact each individual and family differently. FARA has created resources to help guide individuals with FA and their loved ones through the complexities of a new diagnosis by providing a starting point for learning about FA. One guide provides information for individuals with a new FA diagnosis. The second guide provides information for parents of children with a new FA diagnosis. Below you can also find different ways to connect with the FA community.
Steps to take after a new diagnosis of FA
There are several actions you can take after receiving an FA diagnosis. Click through the links to the right to help you plan out what next steps are right for you or your family.
Most people with FA see several specialists to manage different symptoms. You can learn more about different specialists by reading through the Managing FA page. You can also download the Clinical Care Guidelines to share with the members of your or your child’s care team.
Enrolling in the FA Patient Registry will ensure that you are notified about clinical trial and study opportunities. Every person or child with FA is eligible to enroll in the UNIFAI natural history study. You can download the Clinical Trials 101 guide to learn more about clinical trials and studies.
Visit the Connect page or scroll down to learn about ways to engage with other members of the FA community.
FARA hosts and supports several events for the FA community throughout the year. Learn more about educational symposiums and fundraisers you can attend on the Events page.
Sign up for FARA’s newsletter to stay up to date on current research, trials, volunteer opportunities, and events.
Meet the Community
Meet The Community: Aidan LeCompte
Community
Meet The Community: Daniel Huber
Community
Meet The Community: Kendall Harvey
Community
Meet the Community 2: A Closer Look — Alijana Shakya
Community
Meet the Community 2: A Closer Look – Alex Fielding
Community
Meet the Community: Allison Rice
Community
Meet the Community: Anthony Monaco
Community
Meet the Community 2: A Closer Look – Shelby Wright
Community
Meet the Community 2: A Closer Look – Richard Brown
Community
Meet the Community – Leticia Lima Mota
Community
Meet the Community – Mekayla Holm
Community
Meet the Community – Xande Fateicha
CommunityAdditional stories by and about people with FA and their loved ones
Click through the links on the right to find different blog posts, videos, and podcasts, that share FA stories.
Check out this playlist on FARA’s YouTube page to watch videos from the FA community.
In the uplifting award-winning film, The Ataxian, Kyle Bryant, a man living with Friedreich’s ataxia, and a team of friends attempt the most grueling bicycle race in the world, The Race Across America.
On Two Disabled Dudes, podcast hosts Kyle and Sean, who have FA, discuss living life beyond circumstances and have conversations with other members of the rare disease and disability communities.
Members of the FA community have been featured on podcasts produced by pharmaceutical partners including Biogen’s FA Voices and PTC Therapeutic’s Insightful Moments (part 1) and part 2.
Friedreich’s Ataxia News, posts articles written by members of the FA community.
Connect with Others in the FA community
The FA App
Power the cure for Friedreich’s ataxia with the FA App. The FA app helps connect and empower individuals with FA worldwide so they can meaningfully participate in finding a cure for FA.
The Friedreich’s Ataxia Parents’ Group
An online community of parents of children with FA.
The FARA Ambassador Program
A team of individuals with FA that volunteer to support FARA’s mission through virtual and in person opportunities.
Community Events
Meet others in the community at different FARA sponsored and grassroots receptions and fundraisers.
FA Hangouts
An opportunity for adults with ataxia and their friends and family to hangout online - run by volunteer FARA Ambassadors.
Teen Hangouts
An opportunity for teens with ataxia to hangout online - moderated by volunteer FARA Ambassadors.
National Ataxia Foundation Support Groups
The National Ataxia Foundation (NAF) supports several different support groups for people with ataxia and their loved ones.
International Ataxia Organizations
The FA Global Patient Registry keeps an up-to-date list on international ataxia organizations.
FA'ers Only Facebook Group
This is a Facebook group for adults with FA (age 18+). Please note that is group is not run by FARA.
Contact FARA for additional support
This page is not meant as an exhaustive source of information on FA but serves as a starting point on your FA journey. If you have specific questions, want to learn more, or wish to connect with others diagnosed with FA, fill out this form to connect with someone at FARA.