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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!


Nikolaos Kotsomouras

Sandra Johnson Name: Nikolaos Kotsomouras

Age: 44

Where do you call home? Athens, Greece

Education/Career: High School

Who do you live with? I currently live alone.

What is a typical day for you? I wake up early in the morning, I need about 45 mins to wash my face and put clothes on me and then leave for work. After working for 8 hours, I try to relax at home.

 

Scott Armit

Sandra Johnson Name: Scott Armit

Age: 32

Where do you call home? I’m from Scotland, just outside of Glasgow.

Education/Career: High School Standard grade.

Who do you live with? I’m currently still living with my parents but hoping to get my own place in the next few months.

What is a typical day for you? I like to go to the gym in the morning most days if not then go for a walk. My nephew comes in from nursery and we play the computer together then have dinner and watch Netflix.

 

Silvana Camaj

Sandra Johnson Name: Silvana Camaj

Age: 24

Where do you call home? I live in Tuzi, Montenegro.

Education/Career: I have a Bachelor of Science degree in Financial Management and a postgraduate degree of Specialist in Accounting and Auditing. Currently, I am completing my Master of Science degree in Financial Management. FA has encouraged me to confront ableist notions about who is qualified to do what.

I choose to re-define my abilities and exceed expectations in my education and workspace to prove to myself and the world that my physical disability does not place limits on my capability. I hope that succeeding in my education and career will inspire my peers and future generations that living with a disability does not mean that you live with "inability."

Who do you live with? I live with my parents, brother, and sister.

 

Silvany Guimarães Coelho Cotting

Sandra Johnson Name: Silvany Guimarães Coelho Cotting

Age: 54

Where do you call home? I live in Petrolina, Pernambuco, in the northeast of Brazil.

Education/Career: I have a degree in Literature and specialized in Linguistics (regional languages/dialects).

Who do you live with? I spend my days at home. I start the day doing my personal hygiene and having breakfast. After that, I start my workout and therapies (physical therapy and occupational therapy). Then I supervise what has to be done at home and guide the helper with the day-to-day chores. There is also some time reserved to take a look at the plants, to check social media and answer my friend's messages.

FA Hangouts - May 2021

20210114_123951_0000 Brittany and Erin want to hear your best life hacks for living with FA. Do you have any cool tools that you use throughout the day? Do you have any tips for everyday life? Join us on May 26.

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