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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!


 

Brendan Halverson

Brendan HalversonHello! My name is Brendan Halverson, I am 18 years old and live in Battle Creek, Michigan. I just graduated high school and am now beginning life as a college student at Kellogg Community College. I'm planning to study biochemistry and eventually help research FA.

When I was 10 years old, my parents noticed my abnormal walking and took me to the doctor, where I tested positive for Friedreich's Ataxia. I have had to make many adjustments because of this. In 2016, I had a spinal fusion which took me off my feet for a month, but I'm a fighter and bounced back. I have also transitioned from walking to using a walker, to now using a wheelchair.

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Kati Hook

KatiName: Kati Hook

Age: 35 years old

Where do you call home? I live in NW Indiana on my parent's farm. I have an apartment in the barn.

Education: I have an associates degree in Occupational Therapy. Through my internships, I learned tips and tricks that have helped me to maintain my independence.

What is your relationship status? Who do you live with? I am single, I live with my Frenchie, Mabel who keeps me very busy.

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Teen Hangout - May 2019

May teen Hangout 2019Join the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adult
FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

May's hangout will be led by FARA Ambassador Sam Bridgman and we will be joined by FARA's In-House Council/Advocate Brigid Brennan.

The theme: All the way we advocate: With friends and family, in your community, with your doctor, with politicians. How do you advocate? Tell us and learn what others do. It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

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Osama Aweek

OsamaHello, my name is Osama Aweek and I am a FARA ambassador! I was diagnosed when I was 11 and now I'm 18, I'll be 19 on April 16th, 2019. I'm from Tripoli, Lebanon (Asia). I failed grade 8 in my school because I was absent 75% of the time and the school wasn't very helpful. They didn't give me more time in tests or more time to study. I had to go to another city, a 3h drive once a week at least to see doctors, I met every doctor in Lebanon. Shortly after my diagnoses and I was diagnosed with cardiomyopathy and scoliosis.

The first few years after my diagnoses I couldn't get along with my disease. I was bullied for the way I looked or how I walked, but here I am today, a SURVIVOR. I couldn't tell anyone what was wrong at school till the end of grade 10, 4 years after my diagnoses. I decided to spread awareness then and I did a presentation about FA at the end of grade 10.

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