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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 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!

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!!

Fiona Lamond

Fiona Lamond 3Name: Fiona Lamond (Fi)

Age: 33 (May 1985)

Where do you call home? Sydney, Australia

Education degree(s): BA Ancient History, BA Media and Cultural Studies

Who do you live with? I live with my parents and my younger (by two years) brother. 


What's a typical day for you? A typical day for me starts with me finding my glasses and putting on shoes and socks because that gives my feet a bit of stability and traction for my standing transfer into my wheelchair. A trip to the loo. Then my routine changes depending on the day ahead if I'm going out to shop/see a movie/meet up with friends/explore/have speech or physical therapy/or to be out and just have a coffee (and a cake!). If I'm staying home I'll have brekkie and then exercise with weights, resistance bands, and stretches, read this month's book for book club, read/use social media, play games on the iPad and catch up on the telly.

How long have you known you are living with FA? I was diagnosed with FA when I was eleven after I was struck with Guillain Barre. I bounced back to my normal after that but the doctor said my normal wasn't normal. A blood test revealed that my parents were Carriers, I had FA, and my brother was completely in the clear.

Describe your transition from walking to walker/wheelchair. I started using a walking cane my first year of university. And quickly learned all the short cuts on campus. When I went back for my second degree I used a manual wheelchair fulltime and tried to organize my classes to start at the top of campus and move downhill throughout the day. In my last year, renovations made my campus route inaccessible so I bought an electric wheelchair to help me get around steep hills. As a bonus, this meant I could get out and about by myself and go further.

Fiona CollageWhat do you like to do to stay active and what type of exercises work for you to stay strong? Strengthening the core seems to be the key to using every part of your body from standing, lifting/reaching and even talking. It amazes me how muscles you don't even associate with actions give limbs strength. When I exercise my therapist often has to tell me what muscles I should be picturing using.

When FA gets you down, what do you think/do to feel better? I like to get out of the moment when the difficult stuff gets to me. And what helps me do that is very loud (sometimes quite emotive) music to sing along or move to; watching or reading stories (usually comedy, action or fantasy/sci-fi); and making plans for things to do.

What is one way living with FA has POSITIVELY affected your life? FA has had a somewhat positive effect on my perception and that of the people in my life, about the world and disability, and an empathy with other minority groups. My FA has also given me the motivation to try things, to do what I can do while I
can still do it. Something as small as a hair change, to traveling, to volunteering at the 2000 Olympic Games, to going on international student exchange.

What is a favorite motivational quote of yours? I'm not really much of a quote person. I prefer motivational songs, particularly ones with a good beat - it's easier to move if I'm thinking of a song. "Tubthumping" by Chumbawumba, so many songs by P!nk, too many to list here.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Exercise and try not to put off what you can do now. Your life will be different, not over.

What is the first thing you want to do when a cure/treatment to FA is found? I don't know. It's funny because curing FA would be fantastic no doubt. However, I've lived with the diagnosis and symptoms for two-thirds of my life. I guess the first thing I'd do is work at changing my mindset.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? Doctor Who quote - "The way I see it, every life is a pile of good things and... bad things. The good things don't always soften the bad things, but vice versa, the bad things don't necessarily spoil the good things or make them unimportant."

Stephanie Ambassador Signature

Nick Lee

Nick Lee 4Name: Nick Lee

Age: 28 (born in 1990)

Where do you call home? Alabama

Work: Cashier at Lowes Hardware Store

What is your relationship status? Married June 2018

What's a typical day for you? I work Monday, Wednesday, Friday and every other weekend, then I stay at home and relax and spend time with my family and friends.

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