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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!


 

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.

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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.

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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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D. Elizabeth Haubert

Name: D. Elizabeth Haubert

Age: 31

Where do you call home? Philadelphia, Pennsylvania

Occupation/Employment: I'm a disability rights lawyer.

How long have you been living (or known you are living) with Friedreich's Ataxia? In high school, I just thought I was kind of clumsy. I was diagnosed when I was 19.

Describe your transition from walking to walker/wheelchair. Beginning to use a wheelchair was really a watershed thing for me. I thought I would just use it for distances, but I quickly realized how freeing it was to be able to get around without worrying about trying to keep my balance. Trying to get around the city in a chair, I realized just how common physical barriers to access are, leading me to my profession and passion in disability rights.

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