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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!


Spotlight on Iain Fryatt

I stumbled across Iain on Twitter. His handle is @IainsKiliTrek. This made me wonder what his Kili Trek was. So I checked out his Twitter page. Well, what I found was that Iain is awesome. He has FA and uses a wheelchair and climbed Mount Kilimanjaro.  I had to find out more. It follows. It is not hard to tell that Iain loves life as much as he loves a big challenge. 

Read more: Spotlight on Iain Fryatt

3rd Annual 5k Mother's Day Race for Christina

Do you have a person in your life that you would do anything for? For some people it's a significant other, a parent, or teacher. For me, it is my 24 year old sister, Christina. I remember the day my parents told me that I was going to be a big sister. I was instantly obsessed with Christina. She became my best friend even before she was born.

Growing up, Christina and I were extremely close. We would never do something without the other sister being included. During the summer of her senior year of college, my family and I felt something was off with Christina's walking. We would just tease her that her one leg was longer than the other, however, after a huge fall, we knew it was something greater. The day we found out she was diagnosed with Friedrich's Ataxia, a life shortening neurological disease, I spent all night crying to my mother, "How will we get through this? How can I be strong for her? What can I do?"

Read more: 3rd Annual 5k Mother's Day Race for Christina

Stephanie Kilgore

Name: Stephanie Kilgore

Age: 40

Where do you call home? Fort Worth, Texas!

Education (degree(s): Bachelor of Arts in Journalism with a concentration in Public Relations!

Who do you live with? I currently live with my parents, and I have never been married nor have I had any children.

What's a typical day for you? There is no such thing as a typical day when you have FA. That rhymed , LOL! I am on the Board of Directors for a nonprofit called Camp Craig Allen. I am their social media coordinator writing their blog, updating their Pinterest page, and updating their Facebook page. On Facebook I also am the main admin for a support group called "Camp Craig Allen's Corral!" Volunteering for them warms my heart and keeps me busy! You can check them out at www.campcraigallen.org!

Read more: Stephanie Kilgore

Iowa City FA Conference

On Friday, May 1, 2015 FARA hosted it's first FA Conference in Iowa City. There were 14 individuals with FA and their families in attendance. Families traveled from several states in the Mid-West to attend the conference.  

Horizon Pharmaceuticals is developing a treatment for FA. Before the conference, a group of people with FA attended a focus group to see what challenges we had in taking the drug. This medication has to be injected. The thought of injecting a needle into my own arm is scary to me, but the hope of a cure overshadows my fear.

Jennifer Farmer started the conference by giving everyone an overview of FA.  Every time I hear her speak, I learn more about FA. She also told us about ongoing clinical trials and the need for people with FA to be enrolled in the patient registry. 

Read more: Iowa City FA Conference
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