Activity

The deadline to sign this letter was this past Wednesday, January 20th. Over the past two weeks, people living with FA, their family members, their friends, their healthcare providers, and their advocacy organizations came together and produced 73,000+ signatures!

In the next few weeks, the FARA (Friedreich’s Ataxia Research Alliance) team will…[Read more]

We all have them. Let’s hear them. My guilty pleasure is hot Cheetos, what about you?

Is anyone here affected by hearing loss due to living with Friedreich’s Ataxia?Do any of you wear hearing aids and if so, what kind do you have? Do they help positively or negatively?

One thing that has made life a lot easier is installing a cup holder on my walker. Before that, I would place items on my walker and because of my instability, they would usually knock over and spill.

Do you have a cupholder on your device? How has that benefitted you?

With FA, it’s hard to tell if it will be a good day or bad day. When I am having a bad day relating to FA, I tend to have random emotional outbursts that leads me into having a breaking down. This usually happens when I am overworked or fatigued.

Does this happen to anyone else and how do you cope with it?

This is my favorite Martin Luther King quote that reminds me of what it is like to live with FA. Each day I like to celebrate my small victories and what I accomplish.

What’s you favorite MLK quote and why?

No matter how hot it is outside. i always have socks on. It gets dangerous walking around the house.

Does anyone have recommendations for grip socks?

Who here on the forums has used or uses walking stick? I hear it has more stability than a camera and it truly helps with balance when walking since it is as tall as you.

Does anyone have any good recommendations for brands or styles?

Thank you to everyone who signed, wrote a statement, and shared this effort. There has been 38,000 signatures and we are in our last week (deadline is January 20th)!

Click here to read and sign the letter: http://www.curefa.org/advocacy

*This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the…[Read more]

I always have a tough time describing exactly what FA is when other people ask me. Over the years, my divorce and what are usually say is that my muscles are deteriorating over time.

How would you describe FA to someone who has no idea what it even is?

Lately, I have been noticing my hearing is becoming more affected due to FA. I am having trouble listen accurately, keeping my focus, and difficult with speech (whether it is getting my own words out or understanding other people’s words). It is extremely frustrating because I try my best to pay attention and use my energy to do so.

Does anyone…[Read more]