Friedreich's Ataxia Research Alliance - FARA Ambassador Program

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!

Brian

Brian Hey! My name is Brian, I am 36, and from Long Island, NY (Lets go Yankees!).

I was diagnosed in 2020, after many years and almost as many doctors. Looking back, my symptoms started somewhere in my late teens. I was very athletic at that time until I tore my ACL. I never fully recovered and never got back on a field. It hurt, and for a long time I blamed myself. I ended up having 2 more surgeries still thinking and hoping it was a structural problem. And boy, looking back on it, I see how my mind can rationalize things. But slowly the limp became more pronounced, balance became worse, hand eye coordination deteriorated and I knew something else was going on. When I finally received my diagnosis, I took it mostly in stride in part because, #1 I don’t think I understood the gravity of this disease at the time, #2 I had been living with (managing) the symptoms for over a decade, and #3 I kept reminding myself I was the same person as the day before my diagnosis, only now I know more and can be more proactive against it.

Jakub

jakub Name: Jakub

Age: 43

Where do you call home? Czech Republic

Education: I have a PhD degree and I work as a researcher at the university. FA keeps me from working in the lab, however I like mathematics and programming, so I can do a lot of things for others – some advanced mathematical evaluation of experiments, numerical simulation, simple apps. Despite FA I still feel like a valuable member of our research team.

Who do you live with? I live with my wife, we have two children: daughter (14) and son (10). We have two black cats.

What is a typical day for you? I wake up early, after a “morning recharge” (cold shower, exercises) I transport to work. My wife helps me to walk from the car. I have an office on the second floor, so it is 63 stairs. I have to hold the banisters and it takes about 8 minutes, but “use it, or lose it” – it’s just the next exercise. I have the keys to lift, but I use them only if I feel really sick. I am sitting at the computer at work, but I exercise every hour. After midday, I eat my first meal. After work it is time to use the lift, the way downstairs is more difficult than upstairs. At home, I do what is necessary, or I do something with the children, or I just rest. After dinner I am going to sleep. During weekends I usually do not exercise, I rest, or we have some family program (trips, games, some work in the house or in the garden, etc.).

Fatbardha Nuzi

fatbardha-nuzi Name: Fatbardha Nuzi

Age: 33

Where do you call home? Albania

Education: I have a bachelor degree as an elementary school teacher and masters degree in Management and Supervision of Education Institutions.

Who do you live with? I live with my family.

What's a typical day for you? I usually get up at 07:00 on weekdays and it alternates between work and workout. On weekends I plan something different with my family, friends or my relatives.

FARA Teen Hangouts - March 2022

Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. (If you don't have ataxia, you are not allowed to participate in the hangout.) There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

At this hangout we will be talking about movies. Tell us about your favorite! Do you have some movies you hate? Have you seen The Ataxian, a documentary about our fellow FAers Kyle Brant and Sean Baumstark’s race across America? We’ll show you the trailer and how to watch for free.

Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation…the theme gets us going, but we definitely don't stick to it! It isn't counseling.

When:	Saturday, March 12th, 1-2 PM ET (The hangout opens 15 minutes early to try to work out technical issues. Please remember we are volunteers not IT professionals! Come early if you've never attended a hangout on Zoom before.)
Who:	Teens with ataxia ages 13 to 19 (Please note: all the teens will be together)
Where:	On Zoom so if you have access to the internet, speakers, and a camera on your device, you can come!
How:	If you are under 18, you need to get your parents or guardian to download and sign this consent form. Once signed, this should be emailed to madelyn.frederick@gmail.com. Parents/guardians can also ask questions at this email address. If you already have a signed consent form, no need to get a new one! The signed form is good until the signer revokes it. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom. 18 and over: just let us know that you want to come by emailing us at farateenhangouts@gmail.com or madelyn.frederick@gmail.com A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on Zoom. Been before? If you already have permission or you're 18+, Madelyn Frederick will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don't get one, email Madelyn at madelyn.frederick@gmail.com.

Pop an email to either address if you have questions!

AJ Perez

aj-perez-2 Name: AJ Perez

Age: 34

Where do you call home? Austin, Texas (gotta have that BBQ haha)

Education: I have my associates degree, I’ve always chosen the work experience.

I do have a tremendous amount of respect for those who have their degree, especially those who climb all obstacles and conquer the difficulties that stand in their way. I’m in the process of creating an opportunity for people with FA to have their shining moment, bring awareness to FA, and funds to families in need of assistance due to FA. I use to be so mad at FA and I still am, but I’m also happy because it helped guide me to my purpose. I want to help those affected by FA, be that older brother or shoulder for those to lean on... Know this, I’m fighting with you and I will always be in your corner even after they find a cure, I’m here for you!

Tell us about your family: I am married, and have been married for 12 years. FA has definitely implemented itself into our marriage. At times it makes me feel like more of a patient than a partner. I also have two kids, a daughter who is 11, and a son who is 7. They are both so active, and keep me going.

What's a typical day for you? (deep breath haha) Monday - Friday I TRY to get up at 4:30am to go to the gym 3x’s a week (if you don’t use it you lose it) I have a full time job working with special education kids at an elementary school. Then I come home, usually fall asleep and go to my second job from 6-10:30. On the weekends we go go go, usually kids soccer games, or family adventures. We like to go see and do things. FA definitely shows its face but I CAN'T let it win! My legs and lower body absolutely feel the effects; when they weaken, I stumble, often catching myself from falling (if I’m lucky) on nearby walls.