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FARAFARA Cure FA

FARA Ambassador Program

The 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.

Teen Hangout - November 2018

November Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. 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

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Patient Perspective: Brittany's Experience Participating in Research Studies

Patient Perspective Collage 2Hello, my name is Brittany Sommerfield and I am 24 years old. When I was 11 years old I suffered from a Crohn's Disease flare up and was ultimately hospitalized for a month. Because I was bedridden for weeks my movements had become slower and unsteady. When physical therapy said I wasn't getting better after some months, I was referred to a neurologist. At this time as I was so young, I really didn't understand what was truly going on. Eventually, 'ataxia' was brought up to my parents and they started to look at their middle daughter (my older sister)- Chelsey; who was displaying similar symptoms at this time. Within a year, many tests were done and blood work was sent across the country. Then, just after I turned 13, in March 2007, my sister and I were given the genetically confirmed diagnosis of Friedreich's Ataxia (FA).

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Family Weekend in Philly

Family Weekend Collage 2It all started on the morning of October 13th when the annual Ambassador Training begins. After a year of online meetings, we get to meet in person to share, learn, and grow together. We share what we've done, where we've been, and stories of how we've impacted our FA community. This year's speakers were Susan Walther (FARA's Director of Patient Engagement), Jen Farmer (FARA Executive Director), Brigid Brennan (FARA's Advocacy Director), and Kyle Bryant (Founder of the FARA Ambassador Program and rideATAXIA director). Through these speakers, we are updated on research advancements, ways we can advocate for ourselves and others affected by FA, and the biology impacting research approaches. Beyond the education, we receive it is empowering to be surrounded by so many individuals who all have a part interacting with the community to spread FARA's mission. This training day prepares us to speak with families throughout the weekend and year ahead.

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rideATAXIA Philly 2018

ride Philly Collage copyOn Sunday, October 14th, 2018, I had the pleasure of participating in the 10th Annual rideATAXIA Philly. I have been riding, raising funds and enjoying the event for the past few years now. This year was extra special to me because this October marked the 5th year since my diagnosis with FA. So when registration came out, I jumped at the opportunity to build a team again and get ready for the ride!

When it was time to get ready to go to the ride, I put on my rider jersey, my gear and ventured over to Montgomery County Community College with around 600 other riders. I participated in the 4-mile ride, which started at 10am. Alongside me, while I rode this year were my parents. I was also happy to have my grandma in attendance to support the FA community and me. My team, Team Head, was able to raise close to $3,000 this year and hope to raise that next year too.

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