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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!


December FA Hangout 2019

December HangoutThe new year is coming! Let's talk about 'Resolutions.' Do you have one? What do you want for yourself in 2020? For the first time, Justin Bolinger will be leading with RJ Mercure as co-lead.

When: Join us on December 17th or 18th 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 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: December FA Hangout 2019

The Miller Family

Jasmine 3Name: Jasmine Miller

Age: 11 years old

Where do you call home? I have lived in the same home in North Georgia my entire life.

What grade are you in? What do you want to do when you finish school? I am currently in 6th grade. I have always wanted to be a Physician's Assistant or author.

Who do you live with? I live with my mom, my dad, my Golden Retriever, Angel Rose, and several fish.

What's a typical day for you? On Tuesdays and Thursdays, I go to school, which is a University Model school that allows part-time school attendance and part-time home lessons. On Mondays, Wednesdays and Fridays, I complete school lessons at home.

Read more: The Miller Family

Leah Alstin

Leah A 5Name: Leah Alstin 

Age: 36

Where do you call home? I live in Victoria, Australia.

Education degree(s): I have two degrees...one is Primary School Teaching and the other is Arts (Sociology).

Who do you live with? I am married to Joel. We have been married for eleven years and have two children — Milla, who is 10 and Chad, who is 8.

Read more: Leah Alstin

Monique Gutz

Monique GutzName: Monique Gutz

Age: 32

Where do you call home? I live in Blumenau, in the south and subtropical area of Brazil, where the climate transitions between the predominantly tropical climate of my country and the most temperate climate of Argentina.

Education: I finished high school

Which contribution has FA had to you or your career? FA taught me to value little things, small achievements and to have confidence in the future.

What is a typical day for you? My days are always very busy. I go to physical therapy 4 times a week, plus weekly phono-therapy, occupational therapy and psychologist. I also visit constantly my cardiologist and other medical specialists.

Read more: Monique Gutz

November FA Hangout 2019

November hangoutWinter is settling in so let's talk about 'Winter Weather.' How does FA affect your winter experience? How does the cold affect your FA? This hangout will be led by ambassador sisters Noelle and Allison Bouchard.

When: Join us on November 26th 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 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: November FA Hangout 2019
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