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FARAFARA Cure FA

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!


 

Raena

Name: Raena

Age: 13

Where do you call home? Sioux Falls, South Dakota

Education: 8th grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? One year.

What do you like to do to stay active and what type of exercises do you do to stay strong? Playing with friends, theater and Pilates.

What's your most comfortable pair of shoes to wear? No shoes.

Do you participate in any adaptive sports or recreational activities? Performing Arts.

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Read more: Raena

Welsh Bash in the Backyard

The Welsh Family (Pete, Francine, Brendan and Eilish) held their 8th annual "Bash in the Backyard for FARA" fundraiser on Friday, August 8th. The event was designed by the hosts to convey the need for FA research, but with a party atmosphere. Pete’s skills from his days as president of the Alpha Phi Delta Fraternity in college lent to the “beer bash” theme. Francine throws her business skills and expertise into the mix and gets area businesses, family, neighbors, friends, and coworkers involved to make this a true community event. They were blessed with perfect weather and even the "Supermoon" showed up for the event! They had close to 200 guests at the event this year which has been held every year in the Welsh's back yard. Guests this year included some from as far as Florida! The Welshes do infringe a bit on their very generous and hospitable neighbors' back yards as well. The yards are scattered with party tents, chairs, candles, party lights and surrounded by twinkling luminaries.

Read more: Welsh Bash in the Backyard

Ride Ataxia Seattle

Ride Ataxia is an event that I look forward to every year. It is a chance to raise awareness for FA, raise funds for FA research, and give hope to FA families who would otherwise have none. Not to mention the fun that we always have!

In 2012 and 2013, Portland’s own Sauvie Island was host to Ride Ataxia in the Northwest. These two rides were a huge success, as many pedal strokes were taken to move towards a cure. After a long debate, it was decided that Ride Ataxia Portland would become Ride Ataxia Seattle in the Summer of the following year.

Read more: Ride Ataxia Seattle

Matthew Di Iorio

Name: Matthew J. Di Iorio

Age: 33

Where do you call home? Johnston, Rhode Island

Education: I received a Bachelor of Science in Buisness Administration in 2004 from Bryant College.

How long have you been living (or known you are living) with Friedreich's Ataxia? 20 years, August 4, 1994. I was diagnosed in Rhode Island by Dr. Karen Kerman, then she sent me to Boston for a second opinion.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My maternal grandfather had Parkinson's-isms. His neurologist claimed he did not have Parkinson's disease.

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Read more: Matthew Di Iorio
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