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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!


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!

Natalie Denny

Name: Natalie Nadine Denny

Age: 35 years old

Where do you call home? Eskasoni First Nation, Nova Scotia, Canada

Education (degree(s)):  Bachelor of Science in Nursing.  I worked as a community health nurse for nine years in my community.  I am retired now as of two years.

What is your relationship status? Do you have children? I am married to my wonderful husband Leroy and we have a 16 year old daughter named Lenita.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed with Friedreichs Ataxia when I was 18 years old.  I specifically remember being in my high school gym class doing fitness testing.  My younger sister Angie, was my gym partner in that class.  Running...I barely kept up running with the rest of the class.  I knew I used to be very fast which was something I used to be proud of. Then there was the balance test. This was where you stand on a block on 1 foot with eyes closed.  I couldn't do it!!  I immediately suspected that I had FA and told Angie but was afraid to tell the rest of my family.  I didn't want my family, especially my parents to feel sad that another one of us has this devastating disease.  After eventually telling my parents what I had suspected and that I want to be tested, I was relieved that they supported me.  My mother suspected that I might have it also because I would bump into walls when walking down the hall to my bedroom.  I didn't realize until then that I staggered and swayed. My parents waited for me to be ready to be diagnosed, after all, there is no treatment or cure.

Sarah Skelton

Name: Sarah J Skelton

Age: 37

Where do you call home? Cairns, QLD, Australia.

Education: Teritary entrant for Bachelor of Management & recipient of Diploma in Management at Tech. My husband and I own and operate a tree felling business. We have for 13 years currently, I’m the office girl!

What is your relationship status? Do you have children? Been married to Malcolm 16 wonderful yrs. We have 2 boys, Nathan and Jarrod, they are 16 and 14 respectively next month. We have lived in the same single storey, purpose built wheelchair dwelling/house for 13 years. It’s close to the shops and bus stop so I power chair everywhere.

What's a typical day for you? Depends which day, every day has a certain routine but each day is different. Ie Today I got the bus to town on my  power chair, went  to Motor Rego and paid a bill, bused back, home for weekly cleaner and sailing later.

How long have you known you are living with FA? In grade 7 (1989) I was tested for scoliosis, when I had a back brace fitted a few months later the orthopaedic guy referred us (Mum and I) to the neurologist cause of my gait. In 1990 at the age of 12 I was diagnosed with Friedreichs Ataxia based on my symptoms.

Are there any others with FA in your family? Nope.

Describe your transition from walking to walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. In general the transitions weren’t too difficult, in hindsight I wish I’d pushed myself to walk longer. It was a safety issue in the end and having to rely on other people for balance & stuff, I did drive a car with hand controls for a bit. I use my power chair outside the house. I love my independence. 

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