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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!


 

Spotlight on Emily

My name is Emily! I have Friedreich's Ataxia; I was diagnosed at age 12. At age 6 I was the fastest runner and most athletic in my kindergarten class, but at age 8 I realized I had trouble keeping up with my friends when we played outside, I also realized that I had trouble catching my breath. That was also the time that my dad and uncle noticed my gait was “off”. My parents took me to my pediatrician; he suggested orthotics, which helped my walking for a few years. After the few years ended, I had pain in my feet and ankles. Although my foot massages from my dad weren’t enough, my parents took me to the pediatrician again and he recommended for me to see Orthopedics at Children’s Hospital of Wisconsin. After Orthopedics, I saw: Neurology, Cardiology, Gait testing, an MRI on my spine and my brain, and finally Genetics. The Doctor in Genetics had an idea what I had until he took a blood test that told us “for sure” that I had FA. I spent a year and a half at Children’s Hospital to find out what I had! By then I was 12.

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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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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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