Review Looks at Current Research into Friedreich’s Ataxia Biomarkers
Biomarkers for Friedreich’s ataxia (FA) may come from measurements of frataxin (FXN) levels in red blood cells and energy production in calf cells, ... Read more
Updates
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European Initiative Targets Diagnosis, Treatment of Rare Diseases
A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while ... Read more -
A Postcard from the Island of Misfit Toys
Finding a job when you are disabled is challenging. The search leads to frustration, and in my case, shame. I couldn’t find a position, ... Read more -
Choosing a Season of Rest and Rejuvenation
Sometimes I wish that life would slow down, and some days, I convince myself that it will. That’s probably not true, though. I tend ... Read more -
Learning to Accept My Progression and Grandma’s Gift of a Wheelchair
It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in ... Read more
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Thank You, Trader Joe’s, for the Small Act of Kindness
As I mentioned in my previous column, my husband, Justin, and I like to ... -
Seelos Therapeutics’ Investigational Therapy for FA Gets US Patent Protection
Seelos Therapeutics received a Notice of Allowance from the United States Patent and Trademark Office ... -
Battling Like Sisyphus
An online friend recently commented that living with FA is a “Sisyphean dream.” I ... -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ... -
The Zeego Tales: From Florida to Louisiana
Zeego mumbles in his sleep. As I type this, he is on the floor ...
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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