Voices of Friedreich's Ataxia (FA)

When I first met Ron Bartek, the President of FARA, he said “we are in the business of going out

Sometimes I feel like Goldilocks… this weather is too hot, this weather is too cold. Extreme temperatures really affect my

There are two people in my marriage — it isn’t just about FA and me. So, I make a conscious

Progressing through FA is an emotional roller coaster. But I am doing my best to enjoy the ride and face

To fight, I have daily habits. I start each day by accepting that I have FA and the limitations that

I know that physical therapy is worth it in the end. It helps me SAFELY continue going about my life.

My fatigue is a vicious cycle: I get exhausted, so I get sloppy, which makes things harder, which makes me

There are times (seasons) when Friedreich’s Ataxia is a more consuming part of my life, like when I travel across

Keep going forward. Keep living your life. FA will feel all-consuming to those newly diagnosed, and may become an obsession.

The FA community is one of hope and passion. I have met the most amazing and inspiring people in this