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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!


 

Ashley Dodson

Name: Ashley Dodson

Age: 30

Where do you call home? Alabama

Occupation/Employment: I'm a wife and I clean my house, that is my job. :)

How long have you been living (or known you are living) with Friedreich's Ataxia? I was around 8 when I was diagnosed. My teacher noticed my writing was shaky and I couldn't keep up during a spelling test, and when my sister would cut my bangs and I'd shut my eyes, I would loose my balance.

Do you have any known family history of similar symptoms to FA? No (not that I know of).

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11th Annual Fuzzy Buzzy Golf Tournament

Sunday, September 7, 2014 was the 11th Annual Fuzzy Buzzy Golf Tournament. I am amazed every year at the length this tournament has been going. When the Fuzzy Buzzy started, there were not many other FARA fundraisers, but looking at the calendar these days, it’s a packed schedule. Once again, this year, was a great success. We raised $20,000 for FARA and even more awareness! This brings the 11 year total to $125,000, furthering research to find a cure for FA.

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Jason and Alex Dagley

Name: Jason Dagley

Age: 29

Where do you call home? Frisco, Texas

Education: Some college

How long have you been living (or known you are living) with Friedreich's Ataxia? I have known I have FA since I was 10. My symptoms started around the age of 4-5. I was having difficulty in gym class doing aerobics. My coordination was off. The teacher suggested that I see my doctor. The doctor did some assessments in her office. She suggested that I have further tests done at Scottish Rite Hospital. After a thorough neurological test they really didn't know. In my medical record, it states that it couldn't be FA because my parents are only related by marriage. In the middle of all this we moved to Baton Rouge, Louisiana. We were hooked up with a neurologist at children's hospital in New Orleans. She conducted more tests, nerve and muscle biopsy, EMG, nerve conductions, an MRI and a spinal tap. They even tested my parents with some these. Nothing was conclusive.

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Sam Brown

Name: Sam Brown

Age: 14

Where do you call home? Allen, Oklahoma

Education: 8th grade

How long have you been living (or known you are living) with Friedreich's Ataxia? I was eight years old and in second grade when I was diagnosed.

Describe your transition from walking to walker/wheelchair. My chair has made it so much easier getting around - kinda made me lazy. Although, I do wish I could keep my legs straight with a walker. I started using a chair full-time before I was 10. I really don't remember much about that time.

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Preston Lynch

Preston (in the driver's seat) and his friend, Wesley Preston (in the driver's seat) and his friend, WesleyName: Preston Lynch

Age: 21

Where do you call home? South Texas

Education: I am currently going to college at Texas A&M University - Corpus Christi. I am a junior studying for a bachelors in education.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 12 my parents noticed that I was uncoordinated and took me to a pediatrician. He had an idea of what was wrong but he wanted to be certain and that's when the blood tests started. Two weeks later I found out I had FA.

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Read more: Preston Lynch
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