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FARAFARA Cure FA

FARA Ambassador Program

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

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

Slim's Journey

SlimsJourney 2017 1

Saturday, September 23rd, 2017, ’Slim’s Journey FARA 5k run/2.5k walk’ was held in Warrenton, MO at The College United Methodist Church for its 6th annual benefit for FARA (Friedreich’s Ataxia Research Alliance). This was my second consecutive year participating in this journey and as last year, it was a memorable experience. My Team ‘Gotta Have FAith’ grew by 11 people from last year to this and I hope each year this event is held, my team will keep expanding. 

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Pizza, Golf and an Award Winning Documentary

Flatbread Fuzzy Ataxian 1I am not eligible to participate in many of the clinical trials due to my progression and heart problems. The only way I can give back to FARA is through fundraising.

For the 7th year I hosted a benefit at Flatbread Pizza in Bedford,MA. A portion of their pizza sales that night were donated to FARA while Sixpoint Brewery donated a keg and the entire sale goes directly to FARA. At the end of the busy night Flatbread Co. wrote out a check to FARA for $1,200.

This was a difficult time for me to have a fundraiser but Michael would have had it no other way. My uncle Michael lost his battle with cancer two weeks before the event. Although he lost his battle, I knew he would always be behind me through my battle. In his obituary he requested donations be made to FARA in his name. This was the first event of mine Michael has ever missed but I know he will forever be fighting with me. 

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Grace Smith

GraceSmith 1Name: Grace Smith

Age: 10 years old

Where do you call home? Austin, Texas

Education: I am in 5th grade.

Who do you live with? I live with my Mom Susan, Dad Scott, sister Stella (7yrs) and our dog Benji.

What's a typical day for you? In a typical day, I go to school from 9:30 - 2:00. I have a shorter schedule than my classmates and sister, because I get easily fatigued. On weekends, I can only do one big outing or event before getting tired. But I love being at home with my family, and have learned how to conserve energy while also having fun. I go to bed at 8:30, which also helps me have enough energy to enjoy the next day.

How long have you known you are living with FA? I was diagnosed when I was 8 years old. The first thing the doctor discovered was a murmur in my heart that turned out to be Hypertrophic Obstructive Cardiomyopathy. At the time of my heart diagnosis, I did not have visible FA symptoms. About 10 months later though, I saw a neurologist because my balance and coordination had become pretty poor. After noticing that I also had high foot arches, no reflexes, and poor proprioception, he immediately thought I might have FA. It was then confirmed it with a genetic blood test. 

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2017 FA Adventure Day

2017AdvDay 1

"I'm ready!" I yelled to the crowd below me, as they pulled me up to the highest point the cords would let me go. I sat in the adaptive harness, which made me feel like I was a queen on a throne. I took one last breath before they released the cords and let me plummet down. As the wind and the trees ran by me I let out a little scream and began swinging back and forth. It was absolutely exhilarating! The feeling of effortlessly flying back and forth is so freeing, especially to someone who has been living with limited mobility for years. And after a day filled with positive team-building exercises, in that moment I felt like I could do anything. 2017AdvDay 2

My name is Allison Bouchard and my sister Noelle and I both live with Friedreich’s Ataxia. We live in Maine, which unfortunately limits the FA related events we can take part in. Since 2015 we have been attending the Spark Hope FA Adventure day event in Beverly Massachusetts put on by the team at Project Adventure (www.pa.org), Unlimited Possibilities (updoitnow.org), and Voyager Therapeutics (voyagertherapeutics.com). Over the past 3 years we have participated in collaborative learning and problem-solving activities, along with the thrill-seeking challenge course stunts in which we fly through the air. 

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2017 Global Genes RARE Patient Advocacy Summit

2017GlobalGenes 1I was excited to go to my first event as an ambassador for FARA. Coming up to Irvine from San Diego only took about an hour and a half driving. I went with my sister so she got to experience this wonderful event with me.

On the first day we went to every single booth to introduce ourselves and find out what they are doing for rare diseases. I hadn't heard of any of these diseases before this event. They showed us how they are helping rare diseases. Some of them were about finding a way to treat these diseases, and eventually find a cure. Some were about the different ways to find a genetic diagnosis. And there were some about living your life despite your situation.

After learning about the different booths, we went to the Expos. Where they would talk about what they are doing in drug development and some people were talking about how they live their life despite a rare disease. Those were the most appealing to me because some of these people had a unique case from where they are the only one in the world with that rare disease because they have no hope they have to live the best life that they can.  Add a comment

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