Activity

We always ask our kids what they want to be when they grow up. My son Noah wanted to be a baseball player, and while FA has taken that from him, he is pursuing a career in sports journalism.

What did your kids say when they were younger? Has FA interfered with this dream? Or have they been able to find a way to still have their dream job even…[Read more]

On October 25th at 7pm ET, there will be an informational webinar between FARA (Friedreich’s Ataxia Research Alliance) and Design Therapeutics.

Design Therapeutics is developing gene targeted chimeras (GeneTACs™). FARA plans to begin a Phase 1 clinical trial in the first half of next year.

To learn more and register, click…[Read more]

It can be difficult sometimes to know which path to take after high school. When your loved one with FA graduated, did they immediately continue on with their education in hopes of having a career or did they take a break to try to figure out what was next? If they did continue, did they have a hard time choosing a major or did they have a clear plan?

With National Disability Employment Awareness Month here, what gives you a sense of pride while working when living with a rare disease like FA?

For me, I am proud of myself for working full-time and working in the hotel industry (which can be a fast-paced environment) all while still having a work/life balance. Working 40 hours a week is tough…[Read more]

Finding a first job can be challenging. You need experience to get a job but to get experience you have to have a job! What has helped your loved one with FA find a first job? Was it a good fit for them?

At first when I would apply for jobs and have in-person interviews, I used to become very self-conscious about the image of using a rollator. I was nervous of what employers thought of my disability or I was uneasy if employers thought my cognitive ability was not equip for the role(s). I began to build confidence and would think to myself, if…[Read more]

So I was diagnosed with Freidriech’s Ataxia (FA) from genetic testing and have just gone along with. But lately, I have been finding some of the symptoms I supposed have been getting I have not. This questions the results I got from the genetic testing. Did they get it wrong? I had my parents tested, and neither one have the gene that is s…[Read more]

The whole topic of work can get complicated when you have children to care for. Throw in a disability and a global pandemic and things can get crazy! In our family, I “stay home” and coordinate appointments and the day-to-day activities while my husband works full time. Over time, this has been the best for our family, to have one family mem…[Read more]

“Worrying will never change the outcome”.

Living with Friedreich’s Ataxia can bring some doubts and worry some thoughts about the future. What are some tips that you use to overcome your mental thinking to turn a negative into a positive?

The symposium will be held in-person and virtually via a live stream, to allow the community to participate in a way that is most comfortable to them.

All attendees will be able to participate in live polling questions throughout the symposium, via a program called Poll Everywhere. Instructions for using Poll Everywhere are given during the…[Read more]