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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!


2016 FA Awareness Day Video Clip Campaign

FA Awareness Day is all about raising awareness! We’d like to introduce a video clip campaign to raise the bar on raising awareness and we want YOU to join us! What would you share with someone who’s never heard of Friedreich’s Ataxia? Maybe a quick fact or something a little more personal? Here’s how you get involved...Shoot it! Send it! Share it! And that’s it! Sounds like a simple way to spread awareness, right? Oh wait, maybe there are a few more details…

A Marathon, a Pint and a Slice for FARA

Flatbread BMarathon16April arrived bringing some sunshine, the prestigious 120th Boston Marathon, and our annual Flatbread Restaurant fundraising event. For the past several years my cousin, Jeff Morgan, has been running in the Boston Marathon for Team FARA. The staff at FARA helps Jeff set up a fundraising page, sends him a team FARA jersey, and he's literally off and running. This year he was able to raise over $1,000 and much more FA awareness.

The following night I hosted a benefit at Flatbread Pizza in Bedford,MA; a portion of their pizza sales that night were donated to FARA. This was the 6th year having the benefit with Flatbread. In those short years I have become friends with the manager and staff members who also now participate in my annual charity golf tournament, the Fuzzy Buzzy, every September. I always look forward to this night and this year was no exception. 

"Brunch and Learn" at Reata Pharma

THE REATA EXPERIENCE

Reata Pharmaceuticals, in Irving, TX, invited an FA patient panel to speak about our histories and experience living with FA. FARA has partnered with Reata to develop a drug therapy in the treatment of FA. On April 7, 2016, Reata hosted a “Brunch and Learn” to educate all employees about FA by putting a face to the disease.

The conference room in the Reata offices was full; around 50 employees and four speakers on the panel participated in the event. I believe the collective stories of the patient panel were effective in relating the gravity of FA, and the need for a cure. As the meeting concluded, a company statistician introduced herself, and told me that after hearing our stories, “It makes me want to work harder”. I grinned from ear to ear.

FA Hangouts - April 2016

The FARA Ambassador Program presents an FA Hangout talking about clinical trials. This month we are very excited to welcome Felicia DeRosa, FARA’s Fundraising and Communications Program Director, to our April 26th hangouts and Jen Farmer, FARA’s Executive Director, to our April 28th hangouts. We’ll learn how to participate in trials and what it means to finding meaningful treatments. It can’t be done without us! We’ll learn from each other about what it is like to participate in clinical trials. Do folks have strategies for making participating easier? Please come whether you have or have not participated! There will be no pressure to participate in future trials, just sharing about being in trials.

This is what one of the FA Hangout participants says about Hangouts: “I’m really glad I took part in the hangout, and I plan to join the next one. Everyone was really nice and welcoming, and I never felt out of place. It was pointed out that my trying to live in the past is pointless, and I should focus on what I can do now. I think I needed to hear this from someone in the same boat. “ 

Bringing It Home

hope for toMORROW webOn March 11th, friends and family of Anna Morrow, from Baltimore, MD, came together to raise money for FARA during the 'Bringing It Home' Fundraiser. Anna, age 10, was diagnosed with FA in June 2015. Anna’s preschool and church, Brown Memorial Woodbrook, came to parents Kristin and Ben Morrow immediately after her diagnosis with the idea of hosing a fundraiser for the family.

The energy from nearly 400 guests was amazing, not to mention the commitment by all of the volunteers, school and church members and family and friends, who helped make the evening possible. There were three other FA families in attendance, all newly diagnosed with elementary school age children in the MD/PA area. 

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