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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 email@example.com if you would like to be interviewed for a Meet the Community post.
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.
Name: Stephanie Kilgore
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!
Name: Manoj Dahal
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.
Name: Chelsea Chamberlain
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!