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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!


 

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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Spotlight on Kiela Acker-Williams

Strength & Determination

Kiela Acker-Williams has been living with Friedreich’s Ataxia (FA) for more than half of her life but despite all the challenges FA brings, she remains strong and more determined with each passing year to continue fighting for a cure. Kiela was diagnosed with FA at the age of ten but symptoms began becoming apparent six years earlier. She recalls being clumsy and off-balance and always falling down. When Kiela was just seven years old she had a muscle biopsy which led to visits all over Northern California’s Bay Area in search of answers to explain her unusual gait and increasingly frequent falls. A year later she received a diagnosis of ataxia but it was not determined to be Friedreich’s Ataxia for two more years.

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Read more: Spotlight on Kiela Acker-Williams
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