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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!


 

October FA Teen Hangout 2019

October Teen HangoutsJoin 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. October's hangout will be led by FARA Ambassador Andrea Garcia.

The theme will be: Back to school part 2. How is the school year going? How do you talk to friends and school staff about your ataxia? What are your strategies for studying or socializing? We will be joined by 2 people with Friedreich's ataxia currently in college/grad school. Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Read more: October FA Teen Hangout 2019

Jordan Murphy

Jordan MurphyName: Jordan Michael Patrick Murphy

Age: 25

Where do you call home? Chuluota, FL

Education: High School Diploma, some college

What is your relationship status? Single

What's a typical day for you? A typical day for me includes various appointments, personal care activities, and, truthfully, at this point, much daydreaming.

How long have you known you are living with FA? I was diagnosed at age twelve but was symptomatic at a much younger age. It took a long time to diagnose. We were lead to believe my flat feet were to blame for my un-coordination. I've known for thirteen years.

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Megan Leeper

Megan LeeperName: Megan Leeper

Age: 21

Where do you call home? Burleson, Texas. The DFW area.

What is a current goal you have with your education? I am working on getting a Bachelor's degree in psychology with a focus in forensics.

What is your relationship status? I currently live with my parents and two dogs.

What's a typical day for you? A typical day for me is pretty laid back since my schooling is now online. Physical Therapy is twice a week, and because I struggle with fatigue, I am mostly a homebody.

How long have you known you are living with FA? I found out I had FA after a nerve biopsy. Every doctor struggled with figuring out what was wrong. My genetics were examined to confirm FA.

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Lindsay Ashman

Lindsay AName: Lindsay Ashman


Age: I am 39 years old!!


Where do you call home? I was born and raised in Savannah, Georgia.

Education: I earned an English degree from Armstrong State University on Round 2 of college when I was 34 years old. (Round 1 was right after high school and before the FA diagnosis - mobility was my only obstacle, but it was a huge deterrent.)

Who do you live with? I have a 17 year old son, no wedding ring and no apologies. My son and I have lived on our own for six and a half years.

What's a typical day for you? I feel like I live at the grocery store! Really though, I am a freelance writer who is always looking for an interesting story. I spend my days working on something that may or may not be bought. I must be an optimist after all. (wink)

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Seth Holm

Seth HName: Seth Holm

Age: 25

Where do you live? St. Paul, MN

Work/Education: Beginning school in Spring 2020 to work towards an Accounting degree

Who do you live with? I am currently single, I live with my parents and little sister.

How long have you known you are living with FA? I was diagnosed when I was 21 years old at Mayo Clinic in Rochester, MN, so about four years ago. I had symptoms for a half dozen years prior, but balance and coordination had significantly gone downhill by that point in time. It felt good to know why I'd struggled in sports, exercise and simply participating in activities my friends did.

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