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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!


September FA Teen Hangout 2019

September 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. September's hangout will be led by FARA Ambassador Jean Walsh.

The theme will be: Scary Movies. Do you like or hate them? Do you like to watch them at the theater or at home? Did you spill the popcorn when something scary happened? 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: September FA Teen Hangout 2019

Neal Ramer

Neal RamerName: Neal Ramer

Age: 41

Where do you call home? Tippecanoe, IN

Education degree(s): 8th grade

Do you have children? No

What's a typical day for you? Typically, I sleep, eat, take care of my dogs, eat, sleep... rinse, repeat. I am a dog breeder.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed at 18 with Charcot-Marie Tooth (CMT) because there was no genetic test. Then when I was 23, I was correctly diagnosed with FA by a blood test.

Read more: Neal Ramer

September FA Hangout 2019

September HangoutThe topic will be 'The coolest thing you have ever done.' Let's talk about it! This hangout will be led by ambassadors RJ Mercure and Allison Bouchard

When: Join us on September 24th or 25th 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.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

Read more: September FA Hangout 2019

FA Adventure Day 2019

FA Adventure DayWe just completed Spark Hope's eighth annual FA Adventure Day. It was so fun! Met new people, ate some great food, enjoyed the beautiful day, and let ourselves be inspired by each other. I like to let people who came speak to how meaningful the day is to them, rather than me saying how great the day we host is. So, the following is from three of this year's participants.

Read more: FA Adventure Day 2019

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.

Read more: Emery Fitzhugh
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