Together We Will Cure F.A.

Hey how are ya?!

As you may know after reading some of my blogs, or viewing the F.A. page on this website, there is no available cure or treatment for Friedreich’s Ataxia. However, there are many different research trials going on across the country.

Yesterday, I was invited to speak at a pharmaceutical company in Cambridge, MA. The company is performing their own research experiment on treating F.A. The company wanted to hear from actual F.A. patients. I served on a panel with four other F.A. patients. Our ages were 29-years-old, 14-years-old, 39-years-old, 31-years-old, and 24-years-old.

Together, we all explained our struggles living with F.A. to the 100+ members of the company. We all, also, told our individual stories about how and when we were diagnosed with F.A., and how our lives have been living with the disease.

It was a very cool environment, and it was especially great for the audience to hear about our different lives from different age perspectives. Living with an incurable disease can be tough, but seeing potential treatment’s gives us all something positive to look forward to.

We all just need to keep believing that there will soon be an available cure or a treatment!

One Love, Joey

Comments

Image of K McAbier
K McAbier

04/11/2019

Thank you for speaking about FA. I am so bitter over this horrible disease. Both of my sons have passed already because of the complications from this disease. One day I hope they find a cure. God bless you.

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