“Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will NOT accomplish!”
Ron Bartek
FARA President and Founder
When diagnosed with Friedreich's Ataxia (FA), you can feel very isolated since FA is so rare. However, the FA community is strong, supportive, welcoming and full of hope. On social media, you will often see FA people refer to our community as FAmily. And no, that isn't a typo. We are a family fighting against FA together. Please know that you are not alone and that there is community out there that wants to know you and help you. Here is a sample of the FAmily:
There are many great individual blogs by fellow FA patients. Here are a few:
Kelly Barendt's blog My Darling Life with FA
Madelyn Frederick's YouTube channel: Life with Friedreich's Ataxia
FriedreichsAtaxiaNews.com also features a number of blogs, such as:
Fighting FA by Frankie Perazzola
Through My Eyes by Jamie-Lee Dwyer
Little Victories by Matthew Lafleur
A Practical Guide to Life with FA by Christina Cordaro
The Friedreich's Ataxia Research Alliance (FARA) is a great place to start when you are seeking community and correct information about FA.
Here are a few of FARA's resources:
Newsletter (The Advocate)
One of the quickest and easiest ways to search for commonalities on social media is through hashtags. The FA community is no different. We all have different ones that we use for different situations but here are the main ones to check out on Facebook, Instagram and Twitter:
#CureFA
#FriedreichsAtaxia
#RareDisease
#BabeWithAMobilityAid
I also have one that chronicles my journey through my latest clinical trial. Check #KendallRTA408 on Instagram and Facebook.
Kyle Bryant is pretty much the most awesome person there is. My friend is a published author who founded rideATAXIA, starred in a documentary, hosts a very popular podcast, oh - and he has FA.
Here are some of his (countless) contributions to the FA community:
Shifting Into High Gear by Kyle Bryant
To keep up with him, here are his accounts:
Facebook : .facebook.com/bryant.kyle
One of the most important things you can do following an FA diagnosis is to sign up through FARA's patient registry.
This online process is essential to build the database for the scientists and administrators working hard to help find treatments and a cure for the FA community. Registering also keeps you up-to-date on clinical trials and research studies.
Basically, the registry is where the smart folks coordinating the clinical trials and research studies pull their information from. They need all of the information that we can provide, so let’s provide it! Registering is very easy and doesn't take long: www.curefa.org/patient-registry
