May 22, 2019May 20, 2019

The Zeego Tales: Earning the Trust of My Service Dog

Columns, Little Victories - a Column by Matthew Lafleur

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for help. Call me “strong-willed,” if ... Read more

May 22, 2019May 22, 2019

Naturally Occurring Mutation in ISCU2 Protein May Bypass Effects of Frataxin Loss, Early Study Suggests

News

A naturally occurring variant of ISCU2 protein can have the same molecular role as frataxin, an experimental study has found. This discovery may pave the way for the development of ... Read more

May 21, 2019May 20, 2019

My Planning Approach Allows Me to Prioritize My Health Needs

Columns, No Good Excuse - a Column by Sean Baumstark

I was sitting on a plane yesterday thinking about some of my deadlines when I recognized that I was feeling overwhelmed and exhausted. While I wasn’t frustrated and my ... Read more

May 20, 2019May 17, 2019

As My Abilities Diminish with FA, My Frustration Grows

Columns, Fighting FA - a Column by Frankie Perazzola

When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I didn’t experience any pain whatsoever. ... Read more

May 17, 2019May 16, 2019

Rain Won’t Stop Us from Curing FA!

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

After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12. Two months ago, I ... Read more

May 16, 2019May 15, 2019

Wishing Away Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview ... Read more

May 16, 2019May 16, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

News

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been ... Read more

May 15, 2019May 13, 2019

Louisiana FA Community Helps Ease Loneliness

Columns, Little Victories - a Column by Matthew Lafleur

“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community ... Read more

May 15, 2019May 17, 2019

On FA Awareness Day, Friedreich’s Ataxia Research Advocate Is Upbeat

News

“Excited and beyond belief” is how Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA), describes current prospects for finding treatments for the incurable genetic disease ... Read more

May 10, 2019May 8, 2019

On Being a Bridesmaid for a Day

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

I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a ... Read more

May 8, 2019May 6, 2019

Planning for My Unpredictable Future

Columns, Little Victories - a Column by Matthew Lafleur

“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone ... Read more

May 7, 2019May 3, 2019

I Need the Support of Others Now More Than Ever

Columns, No Good Excuse - a Column by Sean Baumstark

Others. Community. Support. Help. Cheerleaders. These are the words that have been flooding my thoughts over the last couple of weeks. If you consider my writings, the podcast that ... Read more