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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!


Túlio Fernandes Apolonio

Sandra Johnson Name: Túlio Fernandes Apolonio

Age: 34

Where do you call home? I live in São Paulo City, Brazil

Education: I went to law school and now I am doing a post-grad in Digital Law.

Who do you live with? I am married, live with my wife and have no children.

What's typical day for you? My routine is going to work everyday and going to the gym after I finish working.

 

Shammaz

Sandra Johnson Name: Shammaz

Age: 28

Where do you call home? Kerala, India

Education: I have a bachelor's degree in finance.

 

FA Hangouts - November 2021

20210114_123951_0000 What are you up to this holiday season? Are you spending it with friends or family, or maybe taking a cool trip? Come chat about it with Brittany and Morgan! November 24, 8-930 PM EST.

Brenda Dixon

Sandra Johnson Name: Brenda Dixon

Age: 64

Where do you call home? Vancouver, BC

Education: College

Who do you live with? I live alone, with my cat.

What is a typical day for you? It varies- exercise, work online, physiotherapy

 

Helen Kearney

Sandra Johnson Name: Helen Kearney

Age: 32

Where do you call home? Dunlavin, a small village in Ireland.

Education: Commerce Hons degree from University College Dublin

What is your relationship status? Do you have any children? Single; living alone, but close to my hometown.

What is a typical day for you? I get up myself, make breakfast and get dressed. I’m a para-equestrian dressage athlete, so each morning I try to do something with the horses; generally riding and a little bit yard work. I return home and my carer then comes in and helps me with housework and helps with my lunch. Then, I relax for the afternoon and possibly do some computer work, if needed.

 

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