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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:

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!

Tricia Herman-Maul

TriciaMy journey with Friedreich's Ataxia started 20 years ago. It was 1997 when my sister was diagnosed with FA, there was little information available and no hope for a treatment or cure. After much research, I knew I also had symptoms of FA but waited until 2008 (age 28) to get the DNA test done. After waiting 3 months the results were positive. Some of my first symptoms in high school were bad coordination, weak ankles, and foot pain. At age 32 scoliosis appeared and I began relying on handrails on stairways. My late on-set and slow progression have led to using a rollator and holding onto someone's arm to get around at age 36.

Read more: Tricia Herman-Maul

Marianne Hakim

MarianneName: Marianne Hakim

Age: 32

Where do you call home? Beirut, Lebanon

Education: B.A in advertising & marketing and Masters in media studies- My thesis which is the backbone of Friedreich Ataxia Lebanese Association (FALA) — an NGO I established — gave me the opportunity to meet and connect with people, who are affected, like me, by FA in my country. The main objectives are to spread awareness about the benefits of the therapies available to medical experts as well, connect people with FA to doctors and therapists and offer them support, orientation, and care, last but not least encourage inclusion in public places, educational institutions, and workplace.

Read more: Marianne Hakim

Beth Hanes

Beth HanesName Beth Hanes

Age 38

Where do you call home? Waterford, OH

Education degree(s): 2003 Bachelor of Arts in Education & 2008 Master's Degree in Education

What is your relationship status? Do you have children? Live with my husband Jason, and 8-year-old daughter, Jillian

What's a typical day for you? My typical day begins with the alarm at 5:15 am. After a two-hour battle, my daughter is on the bus, my dog is in her crate, my husband is out the door, and I have managed to get myself into the van for another day of work! I am a Title 1 Teacher full-time. This is my fifteenth year as a teacher, and I love what I do! I am so blessed to have an employer who has accommodated my needs for almost eight years!!

Read more: Beth Hanes

Dillon Head

Dillon HeadHi Everyone, my name is Dillon Head, I'm openly gay and proud. I have been a FARA Ambassador for the past three years, I'm 23 years old and live with my family in Upstate New York; which I have lived my whole life.

I was diagnosed with Friedreich's Ataxia when I was 17. I was 16 when my family and I started noticing symptoms of something that wasn't right. It took us over a year of seeing multiple doctors to get possible answers. I finally went to an amazing doctor at Strong Memorial Hospital in Rochester, NY. He ordered a genetic blood test which he sent to Baylor University to have them run the test.

Read more: Dillon Head

Teen Hangout - March 2019

March Teen HangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based video chats for the entire group of participants! If someone doesn't have ataxia, they are not allowed to participate in the hangout. At each Hangout, there will be at least three adult FARA Ambassadors present, helping to keep the conversation safe and going.

The Theme: "FA Advocacy." We will talk about what it means to advocate for FA, some ways to do it, and some experiences we had doing that! Since this is just a relaxed conversation...the theme is a great foundation for the Hangout, but we don't always stick to it!

When: Thursday, March 28th, 8-9 PM ET (The hangout opens 30 minutes early to try to work out technical issues. Please remember we are volunteers, not IT professionals! Come early if you've never attended a hangout on WebEX before.)

Read more: Teen Hangout - March 2019
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