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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

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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!


How to Breathe at 12,000 Feet

This article was originally published on kyleabryant.com. It was also featured on huffingtonpost.com.

 
As we cranked away at 12,000’, the air became thinner and thinner. The trees disappeared. Summer ice fields clung to vertical mountain peaks. I felt like I was riding across the moon.
 
I struggled to breathe.

Alyx Holliday

AlyxHHello everyone, my name is Alyx Holliday. I was diagnosed with FA when I was five, so I don’t remember much about it. My mom said it’s a good thing I don’t remember much because what I had to go through was a lot. When I was younger I used to play baseball. I played for 17 seasons I was 14 years old when I had to stop to have the spinal fusion surgery I’m sure some of you have had it too. My adaptive P.E. teacher and my physical therapist taught me a lot of great ways to keep myself strong for all the upcoming trials.

My senior year I decided to get more involved, so I did the Mr. Salem Pageant. I had to learn two dance routines and I had to come up with a talent, so I decided to do a comedy routine. In June I went to prom and had a grand time dancing the night away. I learned that I really love to dance. Also in June I graduated with honors from my High School and I got to walk across the stage. 

FA Hangouts 8

The FARA Ambassador Program presents an FA Hangout with the theme of: Discussing the film The Cake Eaters.
 
At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! 
 
This month’s hangout is open to anyone with FA and a translator if needed. We can talk about The Cake Eaters. It is a coming of age movie in which the main character (played by Kristin Stewart) has FA. You don’t have to like it! In fact there will be more to talk about if we have pros and cons to discuss. Watch the movie before the Hangout and be ready to join in on the conversation! Here are a few online spots to stream The Cake Eaters... 

9th Annual Welsh Bash in the Backyard

On Friday, July 31, the Welsh family hosted their 9th annual Bash in the Backyard to benefit FARA. Over the course of the last 9 years, the bash has allowed the Welsh family to raise and donate upwards of $200,000.00 to support the efforts of the folks at FARA. Obviously, they know how to hold a successful fundraiser by now. The event this year was no exception. As of right now, over $23,000 was raised as was an invaluable amount of awareness. 

Claxton Classic and Wing Party

To kick off the fun (and their wonderful fundraising), Bill Sabia, Randy Sisulak and the CLAXTON CLASSIC Golf Tournament hosted a great wing party at Hooters, Baltimore Inner Harbor on July 23rd. Over-looking the Baltimore Harbor, it was an absolutely beautiful, mild evening in Charm City for a party. Hooters has the best wings (or so I’ve heard, FA has made it too hard for me to eat wings! I can’t hold onto them!), so the all you can eat/drink special appealed to the public even if they had never heard of FARA. Yes, it was definitely the wings…

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