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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.

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!


 

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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FA Woodstock and Ride Ataxia Chicago 2014

imageThe 5th annual FA Woodstock was held Thursday, July 17, 2014 – Saturday, July 19, 2014. It is a three day event hosted by the Hook Family at The Flying H Ranch in La Porte, Indiana who graciously open their home up for people affected by Friedreich’s Ataxia (FA) and their families to enjoy a variety of activities. The 21 acre ranch is home to lots of livestock including cows, horses, a mini horse, bunnies, a goat, a pig, mini donkeys, dogs, a bird and probably a few more species unmentioned. The Friedreich’s Ataxia Research Alliance (FARA) and The Children’s Medical Center of Philadelphia (CHOP) staff came out to the event to conduct medical research that would usually take half a year to collect.  

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