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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!


 

Emery Fitzhugh

Emery FName: Emery Fitzhugh

Age: 20 years' old

Where do you call home? Texas

Education degree(s): High school degree

Who do you live with? I'm single and I live with my parents

What's a typical day for you? A typical day for me is watching Netflix, eating, and cleaning. I love drawing, painting, and taking care of my 3 dogs, which are a black lab, a Chihuahua, and a mix. I also love watching musical movies and watching Youtube.

How long have you known you are living with FA? I knew something was wrong at 7 but was diagnosed at 8.

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Read more: Emery Fitzhugh

The Batta Family

Batta Family 3Name: Ryanne Batta

Age: 15

Where do you live? Watertown, SD

Education/Grade: I'm a sophomore in high school.

Who do you live with? I live with my parents, my brother Sam when he's home from college, our dogs Buddy and Solar; Solar is my service dog.

What is a typical day for you? During the school year, I go to some classes at the high school and also work from home for other classes. In the summer, I like to spend my days at home by the lake.

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Erin Wooten

Erin WootenName: Erin Wooten

Age: 26 years old

Where do you call home: Carthage, Mississippi

How long have you known you are living with FA? I started having early onset problems when I was about 12 years old but I didn't get a correct diagnosis until I was 19 years old. I started off thinking I was just a clumsy kid. About age twelve, I couldn't even walk a semi-straight line. I went from one side of the hallway at school to the other like a ping pong ball. I also could no longer walk up or down stairs without help. My legs just felt unexplainably funny. I started seeing doctors shortly after. With those symptoms, I was diagnosed with inner ear problems.

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Read more: Erin Wooten

August FA Teen Hangout 2019

August Teen HangoutJoin 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. August's hangout will be led by FARA Ambassador Madelyn Fredrick.

The theme: Going Back to School. You can't wait to see everyone? You're really worried about your Ataxia and school (your peers, your schoolwork, anything)? Or somewhere in between? 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: August FA Teen Hangout 2019

August FA Hangout 2019

August Hangout 2019The topic will be 'Everyday Accomplishments.' Let's talk about it! This hangout will be led by ambassador Jake Tompkins.

When: Join us on August 27th or the 28th at 8-9:30 pm. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 pm EST each of the two days.

Read more: August FA Hangout 2019
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