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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Wes Gates

Wes GatesName: Robert W. Gates (Wes)

Age: 31

Where do you call home? Choctaw, OK

Education: degree Bachelor of Art in Multi-Disciplinary Studies from the University of Oklahoma

Tell us about your family: I live with my parents and have never been married.

How long have you known you are living with FA? I was diagnosed at age 13 by Walter Reed Army Hospital in Washington DC when we lived there.

Are there any others with FA in your family? No

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.

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!!

Dawn Sellers

Dawn 3Name: Dawn Sellers

Age: 38

Where do you call home? Northeast Texas

Education degree(s): I have an associates degree in fine arts.

What is your relationship status? Do you have children? I currently live with my Dad and step-Mom. I am single and have a gorgeous daughter.

How long have you known you are living with FA? I was diagnosed in 1996.

Are there any others with FA in your family? My brother had it, he passed away seven years ago.

Cindy Deatherage

Cindy DName Cindy Deatherage

Age 56

Where do you call home? Central Illinois

Education degree(s): Some college with a Certificate in Clerical and Word Processing

What is your relationship status? Do you have children? I have been married 33 years and have fur-babies

How long have you known you are living with FA? I was "diagnosed" in 1979 by Mayo Clinic. They did many neurological and blood tests and were 99% sure that I had Friedreich's Ataxia. When the gene was discovered I had genetic testing done which proved them right!!

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