July 18, 2019July 18, 2019

Review Looks at Current Research into Friedreich’s Ataxia Biomarkers

News

Biomarkers for Friedreich’s ataxia (FA) may come from measurements of frataxin (FXN) levels in red blood cells and energy production in calf cells, imaging approaches in the nervous system ... Read more

July 18, 2019July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

News

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 also accelerating the development of ... Read more

July 17, 2019July 15, 2019

A Postcard from the Island of Misfit Toys

Columns, Little Victories - a Column by Matthew Lafleur

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, even with decent grades from ... Read more

July 16, 2019July 12, 2019

Choosing a Season of Rest and Rejuvenation

Columns, No Good Excuse - a Column by Sean Baumstark

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 to take on projects and ... Read more

July 15, 2019July 12, 2019

Learning to Accept My Progression and Grandma’s Gift of a Wheelchair

Columns, Fighting FA - a Column by Frankie Perazzola

It was a beautiful, sunny day in Southern California, and I was out with my mom and my grandma. We usually get lunch in town and hang out for ... Read more

July 12, 2019July 9, 2019

Thank You, Trader Joe’s, for the Small Act of Kindness

A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

As I mentioned in my previous column, my husband, Justin, and I like to complete our weekly chore of grocery shopping early in the morning. The two main reasons ... Read more

July 11, 2019July 11, 2019

Seelos Therapeutics’ Investigational Therapy for FA Gets US Patent Protection

News

Seelos Therapeutics received a Notice of Allowance from the United States Patent and Trademark Office covering the use of SLS-005 (trehalose) for the treatment of Friedreich’s ataxia. A Notice of ... Read more

July 10, 2019July 8, 2019

Battling Like Sisyphus

Columns, Little Victories - a Column by Matthew Lafleur

An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that. At first glance, the idea seems futile, ... Read more

July 9, 2019July 3, 2019

Skip the Excuses and Make Your Own Pullup Bar

Columns, No Good Excuse - a Column by Sean Baumstark

In a recent column, “Accountability Can Change Everything,” I gave credit to this column for helping me raise the bar in my personal performance by improving my awareness of ... Read more

July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

News

It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

July 3, 2019June 28, 2019

The Zeego Tales: From Florida to Louisiana

Columns, Little Victories - a Column by Matthew Lafleur

Zeego mumbles in his sleep. As I type this, he is on the floor beside my computer desk, woofing quietly and moving his legs and paws slightly. I grin, ... Read more

July 2, 2019June 28, 2019

Nothing Important Happens by Accident

Columns, No Good Excuse - a Column by Sean Baumstark

I have this phrase in my head that seems to be on constant repeat. I can’t tell you exactly where it’s from or if perhaps I put these words ... Read more