September 17, 2020September 14, 2020
Acting Together to Cure Friedreich’s Ataxia

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He ... Read more
September 17, 2020September 17, 2020
High Levels of Frataxin After Gene Therapy Caused Heart Problems in Mice

When present at levels 20 times higher than normal, frataxin became toxic and caused heart problems in a mouse model of Friedreich’s ataxia ... Read more
September 16, 2020September 14, 2020
Moving Past Unrequited Love

“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to ... Read more
September 15, 2020September 11, 2020
Using Our Voices to Aid Research and Prompt Change

I’ve had the privilege of making a lot of friends in the rare disease community since becoming a member myself. I’ve had many conversations ... Read more
September 14, 2020September 10, 2020
Reflecting on My Life Before FA

Oh, selfies! What a wonderful way to waste time, learn the best facial angles, and finally get a good picture of ourselves, because the ... Read more

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

October 5, 2017February 20, 2019

Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports

News

Many Friedreich’s ataxia patients experience urinary tract symptoms, bowel problems, and sexual dysfunction, which leads to a lower quality of life, research shows. The study, “Urinary, bowel and sexual symptoms in a cohort of patients with Friedreich’s ataxia,” was ... Read more

Acting Together to Cure Friedreich’s Ataxia

High Levels of Frataxin After Gene Therapy Caused Heart Problems in Mice

Moving Past Unrequited Love

Using Our Voices to Aid Research and Prompt Change

Reflecting on My Life Before FA

Broad Institute Launches Accelerator Initiative to Study Friedreich’s Ataxia

If These Wheels Could Talk

Growing Into Life With a Disability

Informing Children About Friedreich’s Ataxia

Natural Antioxidant Improves Heart Function in FA, Small Study Shows

Hurricane Laura Barely Missed Me

Subscribe to our mailing list

Same But Different Photo Contest Celebrates People With Rare Diseases

Focusing on One Thing at a Time

Feeling the 7-Year Itch With Friedreich’s Ataxia

Google’s Project Euphonia Asking Patients to Help With Speech Recognition Technology

Learning to Confront the Mysterious Villains in Our Lives

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

Adopting a Dog While Being Disabled Is All About Adapting

Finding the Ideal Life Partner

Suppressing Two Gene-silencing Enzymes May Hold Promise in FA, Study Shows

When a Rare Disease Treatment Comes Out, but It’s Not for You

Small Lessons Can Be Learned by Addressing Big Issues

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Changing Perspectives and Growing Internally After My Diagnosis

FDA to Review Confirmatory Trial Proposal for Omaveloxolone

When Friedreich’s Ataxia Gives Me the Disabled Blues

What ‘Hamilton’ Taught Me About Waiting

New Streaming Channel Showcases Rare Disease Films

Is the Grass Greener Without Friedreich’s Ataxia?

Partnership Again Supplies Adaptive Cycling Equipment to FA Patients

First I Swim, Then I Drown, Now I Float

Maintaining Abilities With Friedreich’s Ataxia

COMP Recommends CTI-1601 as Orphan Drug for Treating Friedreich’s Ataxia

Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports

Pin It on Pinterest