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!

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.

Mary Nadon Scott

Name: Mary Nadon Scott

Age: 33

Where do you call home? Northfield, Vermont (Central Vermont)

Education: I received my Bachelor’s Degree in Nursing (Registered Nurse) from the University of Vermont in 2004. However, I am currently a stay at home Mom.

What is your relationship status? Do you have children? I am happily married to my wonderful husband Kevin, and I have 4 children; 2 step-children (Isaac 10 and Bella 8) and 2 born to me (Elijah 4 and Gabriel 2).

What's a typical day for you? I am a stay at home Mom, and stay busy with my 4 year old in pre-school and my 2 year old toddler. I also try to keep a regular work out routine with riding my recumbent bike, wheelchair aerobics, and alternating seasonally between aquatic therapy and wheeling laps on the track at a local university.

How long have you known you are living with FA? Growing up I was always the clumsy girl; tripping a lot, very poor balance, ran awkwardly, etc. So looking back now, I can see signs of FA, however at the time, I always attributed most symptoms to having scoliosis (I was diagnosed with that in 8^th grade, by a school nurse). My FA diagnosis came later, when I was in college in 2002. I have been living with FA for 13 years.

Are there any others with FA in your family? I am the only one in my family with FA.

Clint Stewart

Name: Clint Stewart

Age:31

Where do you call home? Houston, TX

Education: Bachelors' in Business/Communication from Grove City College (PA); Masters' in Business Administration from Mount Vernon Nazarene University (OH)

What is your relationship status? Who do you live with? I am very single and share an apartment with my dad and his girlfriend.

What's a typical day for you? I don't have many typical days. I have a physical therapist visit twice a week, and volunteer at the local hospital, so it all depends on the day.

Are there any others with FA in your family? I am the only member of my family "lucky enough" to have FA.

Describe your transition from walking to walker/wheelchai: I was able to walk (shakily) through high school. After graduation, I had my spinal fusion operation, which slowed me down a little. Over the past 12 years, I have made the transition from occasionally standing to full-time wheelchair user.

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active I go to the gym at my apartment and lift weights sometimes, I am not a gym rat by any means, but those few exercises help my upper body strength. My physical therapist focuses mostly on my legs and core with stretching and low-impact work.

Joe Tyler

Name: Joe Tyler

Age: 33

Where do you call home? Cincinnati, Ohio

Education: BS Finance from Saint Louis University

What is your relationship status? I’m engaged to Karen Ried.

What's a typical day for you? I am an Area Sales Manager for Hogan Truck Leasing. We assist companies with truck leasing needs, alternative financing, maintenance management, etc. My job requires me to regularly visit customer locations, tour our Cincinnati facility, etc.

How long have you known you are living with FA? Diagnosed in 2012, been showing balance issues since 2002.