Friedreich's Ataxia Research Alliance

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!

Dave Arnold

“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch

My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently.

Crystal

Name: Crystal

Age: 36

Where do you call home? St. Louis, MO

Education (degree(s): Just graduated (last weekend) with an Associate of Arts in Teaching

What is your relationship status? Do you have children? I have been married for 16 years and have a 10 year old son.

What's a typical day for you? My typical day will be changing. For the last 3 years I have been in school, so my days have consisted of school, homework, housework, and taking my son to his extracurricular activities (baseball, martial arts, gymnastics, cub scouts, and anything else he has decided to try over the years). Since January of this year, I have been going to the gym 3 days per week.

Since I am not in school anymore, I am trying to catch up on my house work, since I have not done as much as I would have liked in recent years. I go to the gym 3 days a week. This takes up half of my day because the gym is 45 minutes away one way and my workout is 90 minutes. Also, my son is in cub scouts and my husband is leader and I am assistant leader. Planning activities for our den and also assisting our cubmaster is very time consuming. Now that I am out of school I can devote more time to planning events for our scouts. I also hope to relax more and read books for fun again (I have not done much leisure reading since I started college).

Stephanie Kilgore

Name: Stephanie Kilgore

Age: 40

Where do you call home? Fort Worth, Texas!

Education (degree(s): Bachelor of Arts in Journalism with a concentration in Public Relations!

Who do you live with? I currently live with my parents, and I have never been married nor have I had any children.

What's a typical day for you? There is no such thing as a typical day when you have FA. That rhymed , LOL! I am on the Board of Directors for a nonprofit called Camp Craig Allen. I am their social media coordinator writing their blog, updating their Pinterest page, and updating their Facebook page. On Facebook I also am the main admin for a support group called "Camp Craig Allen's Corral!" Volunteering for them warms my heart and keeps me busy! You can check them out at www.campcraigallen.org!

Manoj Dahal

Name: Manoj Dahal

Age: 36

Where do you call home? Changunarayan, Bhaktapur, Nepal

Education (degree(s): Masters in Business Studies from Tribhuwan University, Katmandu Nepal. Completed in 2007 but being FA, I am without job. Here in Nepal, nobody wishes to take me as an employee because of my physical condition as we do not have any accessible environment for disabilities.

Who do you live with? I am single, living with my parents.

What's a typical day for you? I am staying at home making entire world within four corners of my room.

How long have you known you are living with FA? (When and how were you diagnosed?) Since 1995, I have been FA. When I visited the doctor at Bir hospital in Kathmandu by checking my symptoms, he diagnosed me as FA. I had got my MRI also.

Are there any others with FA in your family? No any others in my family is with FA.

Describe your transition from walking to walker/wheelchair. From 1995,I walked with support of my friends. When I used to walk on my own, other people used to call me a drunkard. After 2010, I stay most of the time in my home. Once or twice in a month when I go out to visit or for special purpose, two of my friends catch me to support walking because we have no good accessible wheelchair in our place. That's why I have to make four corners of my room as entire world.

Chelsea Chamberlain

Name: Chelsea Chamberlain

Age: 31

Where do you call home? Tempe, Arizona

Education (degree(s): I have a BA in Communications from Arizona State University (ASU) and a Masters in Strategic Public Relations from George Washington University

What are your living arrangements? I live with my baby, Molly in my house I bought in 2009. (Molly is y 6yr old, 80lb, black lab!)

What's a typical day for you? Monday – Friday, I wake up, get ready and drive to work; after work I either go to the gym, yoga, or come home. On the weekends I hang out with friends, go out, shopping, reading … just depends. I am a Program Manager for the President’s Office at ASU, where I run two programs – I also manage the internal PR for the CEO of ASU Foundation. Needless to say, my work keeps me insanely busy – on average I work a 50hr work week … but I love it!