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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!


FARA Family Fun Day Fundraiser on the Farm

 

January 17th, 2015 was a truly amazing day at Buti T Ful Farms, in lovely Plant City, Florida.

We hosted our first ever fundraiser with a goal of $5,000.00 in our mind to help fund a cure for this horrible disease called FA that affects our amazing nephew Gavin Lambert. The day started out with perfect weather and tired cooks as my brother and Gavin's dad had been up all night BBQ'ing for the event. Then it happened...the petting zoo arrived, the horses and ponies arrived; the bounce houses and the tents and most importantly our volunteers.

Allison Dana

Allison DanaName: Allison Dana

Age: 35

Where do you call home? Burlington, Vermont

Relationship status? Do you have children? Married for four years with three year old identical twin girls.

Occupation/Employment: Stay-at-home Mom.

Education: Bachelor of Science in Nuclear Medicine Technology.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was 19 and a junior in college when I was diagnosed although looking back, I was showing symptoms about 16. Before I had the genetic test, I was taking Anatomy. The last section of the class was CNS (central nervous system). When I read the description of ataxia, I knew that's what I had. I didn't know what kind but found out it was FA a few months later when I got the results of the genetic test.

MTC Gratitude

We have learned about many FA community members through our Meet the Community blog posts. Our contributors have: made us laugh; made us cry; given us wisdom; and reinforced our belief that people with Friedreich’s Ataxia and their friends and family are strong individually and even stronger together. Most of all we know how to live with FA better because our contributors thoughtfully shared themselves. To thank them we have shared our favorite lines from their posts (In no particular order.). Did we miss yours? Share it with everyone in the comment section below. We can’t wait to read the future Meet the Community posts.

FA Hangouts 2.0

Greetings,

We had three successful FA Hangouts last month discussing What does FA mean to you?. We laughed, we connected, we hung out. Thank you to all who participated in the first steps of the program.

This month's topic will be Everyday At-home Adaptations and Modifications and is open to all persons with FA and a translator if needed. Hangouts will be held Monday January 26 and Tuesday January 27 at 7 and 9 PM EST both days. More times will be added if needed. Email me at john.cernosek@gmail.com to sign up. Please indicate if there are any times that do not work for you. We will try to accommodate everyone.

An email will go out 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. Topic conversations will begin at the top of the hour.

#AnnasArmy Purple Out

I have been seeing posts about #AnnasArmy for a few years now. They featured high school teens with lots of energy, smiling faces, purple everywhere and support for the FA community. So when I was invited to attend the annual #AnnasArmy FA awareness basketball game, I had to see what all the hype was about.

When we received a warm and energetic welcome at the Parkersburg South pep rally on Friday afternoon, the six hour drive from the greater Philadelphia area felt well worth it. We entered the gymnasium to find the entire basketball team sitting in the stands in purple long sleeve shirts. As more and more kids started to file in, all wearing purple, the excitement started to build.

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