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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!


Megan Dewar

Sandra Johnson Name: Megan Dewar

Age: 23

Where do you call home? Lekwungen Territory (Victoria, Canada).

Education/Career: I have recently completed a BA in Environmental Studies, a BA in Sociology, and a certificate in the Human Dimensions of Climate Change. Currently, I am excited to explore the intersection of art and disability while continuing education to become an art therapist.

Who do you live with? I live with my friends, who are also my roommates.

What’s a typical day for you? During the current pandemic and winter days, I spend most time in my home listening to music, doing art, writing for my blog, cooking with my roommates or going for drives. I feel most empowered through the process of creation, so I am constantly immersed in art, craft, and woodworking projects. Additionally, I enjoy contributing to mutual aid initiatives in my community, I currently volunteer and organize with a grassroots food security group and a radical bookshop.

Corinne Oehen

corinne oehen My name is Cori, I‘m 35, and I live in the German part of Switzerland.

I was diagnosed when I was 16. My youngest brother had early symptoms, so they diagnosed him when he was 10. The doctors told to my parents it’s hereditary, so they tested my DNA too. I started to use a wheelchair 13 years ago. Twice a week I do physiotherapy, with home work-outs and Yoga too, I try to stay fit.

With the diagnosis of FA, my life changed a lot. I learned to accept and to enjoy life with ups and downs. With FA, life is not over. Any of us humans, have a backpack to carry; so keep carrying and smiling. I love traveling, surfing, cooking and yoga.

Ana Clara Andrade

Sandra Johnson Name: Ana Clara Andrade

Age: 14

Where do you call home? I live in Heliopolis, in the northeast of the State of Bahia, Brazil

Education/Career: I am a ninth grader and my dream is to be an interior designer.

What’s a typical day for you? My mornings are reserved for my school classes. In the afternoon I do exercises. In my free time I enjoy painting and playing with my toys and games.

AJ Perez

brittany sommerfield Hello, I am AJ Perez. I am 33 years old and from Austin, Texas.

I was diagnosed with FA just recently, last March to be exact. Although the diagnosis was recent, I have been living with the symptoms for about 10 years. During that time, it was a frustrating, annoying, doubtful time going to unaware doctors. It's not their fault it’s a rare genetic disease. It was so frustrating being told by Dr.'s test after test that I was fine, but knowing myself something was wrong, and having everyone else look at me as though I was drunk due to my speech, and lack of coordination. That is one of the known and common experiences that connect and bring us together. p>

FA Hangouts - March 2021

20210114_123951_0000 From your friends to your family members: How does FA affect your relationships?

RJ and Morgan are curious. March 30 & 31.

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