Personal experience with trials

[Clifton]

I am currently on a trial in florida but i live in texas. The dr’s and everyone is really nice. They recommend local food to try. Flights are so so but it is a little tiring but all the folk in gainsville are really cool.

[Matthew]

I really need to participate in more. Are the people over there nice? Is it a difficult thing- like do they wake you up at all hours to take your vitals? Do you have to eat the hospital food? Do you see other FAers while there? Sorry for all the questions; I am curious!

[Shandra]

Matt you should sign up for the research in Gainesville!! The FA Biomarkers study is still recruiting: https://clinicaltrials.gov/ct2/show/NCT02497534

Also I live in Gainesville so it’s a good excuse to see my friends 🙂

[Matthew]

Here is me showing how ooooooooooooold I am:
I was diagnosed with FA before the gene was identified. I actually signed up for this trial and they need documentation of a genetic test. I don’t have one. I need to get off my butt and get one done.

[Naeem]

How tooo participate in a trial given that my hospital and whole my country Tunisia or neigbours countries don’t participate in trials

[Matthew]

Hey Naeem,
Thanks for your interest in clinical trials. Just keep checking to see if there is ever one you can reasonably get to. Unttl that happens, just keep on reading the latest scientific news, and know that you are appreciated!