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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!


Jennifer Gasner

Jennifer GMy name is Jennifer Gasner. My FA diagnosis came nearly 30 years ago, at 17. It was genetically confirmed when the test became available. I have a BA in English and a Masters in Recreation. I grew up in Wisconsin. In 1999 I started using a wheelchair and began working with Independent Living Centers, (ILC's), an important resource for people with disabilities that I knew nothing about. That experience changed my perspective on disability so much. It led to being proud to be disabled, which I had been avoiding referring to myself as. I also felt comradery with my disabled friends, regardless of their diagnosis. I had only briefly met one other FA'er and felt very alone. It was great to discover commonalities and people who had experienced things I hadn't as FA progressed.

Matthew Jordan Penman

MatthewName: Matthew Jordan Penman

Age: 35

Where do you call home? Calgary, Alberta. Canada.

Education degree(s): I have a diploma in Professional Counseling, Certificate in Addiction Work and I am currently working on my Masters in Counseling.

Who do you live with? I am living with my wife, my father, who lives with us, and our fur babies, Fergus (Husky/German Shepherd), and Charli (Purebred Boxer).

What's a typical day for you? Currently, I am working in a harm reduction facility for seniors and working on my portfolio for my RPL to get into a master's program. We are trying to buy a house right now, and it's our first, so it's very time-consuming.

María Luisa Ledesma Cano

Maria MTC 3Name: María Luisa Ledesma Cano

Age: 27

Where do you call home? Talarrubias, Badajoz, Spain

What is a current goal you have with your education? My dream would be to work as a social worker, because I am studying it.

Who do you live with? I live with my mother, but in the school period, I live in a center where my life is independent.

What's a typical day for you? Well, in my town, it's a little boring because there is little accessibility. But where I live for a few months, I get up to study and do activities.

June FA Hangout 2020

Maintaining IndependenceThe FARA Ambassador Program presents an FA Hangout talking about: How do you maintain independence? Tell us! June 23rd and 24th at 8-9:30 PM EST. This hangout will be led by Justin and Lake.

At FA Hangouts, we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every Hangout is open to anyone 18+ with FA and a translator if needed for hearing or speech difficulties. (mark your calendars, FA Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST.

Elsaid Younes

ElsaidName: Elsaid Younes

Age: 35

Where do you call home? I live in Cairo, Egypt.

Education degree(s): I hold a master's degree in theoretical chemistry from Lund University in Sweden.

Who do you live with? I live with my family, and I am Single.

What's a typical day for you? Staying at home on my computer.

How long have you known you are living with FA? I was diagnosed with FA in 2001.

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