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FARAFARA Cure FA

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

Ride Ataxia Dallas 2015

Ride Ataxia Dallas 2015 was on April 12 at the University of North Texas. The weather was absolutely perfect for the 500 cyclists. The amazing FA community raised over $140,000 for FA research!  Together we will cure FA!

Every spring, I look forward to traveling down to Denton, TX for Ride Ataxia. I get to see friends and FAmily that I don't get to see very often. I was worried about the weather when I looked a week before the ride. There was a 70% chance of rain! The chance decreased as the week went on, but my family still packed our raincoats and umbrellas just in case!

Read more: Ride Ataxia Dallas 2015

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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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 8th 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.

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Masquerade Where Wishes Come True

On March 28, we rolled out the "purple" carpet for the third annual Masquerade to CureFA.  This year's theme was "Where Wishes Come True" and everyone knows what our wish is.... to find a CURE.  It was a fairy tale setting with the horse drawn carriage and Cinderella dresses.  Anna's Army & the students at Parkersburg South have been very supportive of Anna, since her diagnosis of FA in August of 2012. I always get a bit emotional when I see the support from the beautiful girls parading in their elegant gowns and bedazzled sneakers.  They know Anna can't wear heels, so neither will they.  

It was two celebrations in one as Anna celebrated her 18th birthday.  Her best present was a surprise visit from our FAmily member, Ashley Sharp Dodson. Ashley & her cousin Cara Campbell drove all night from Alabama to West Virginia for the surprise.  Since only I knew they were coming, I  arranged for Ashley to  be at the beauty shop getting her hair & make up done when Anna came in to have hers done.  Mission accomplished! The girls got beatified and Anna was surprised all at the same time. The girls had a blast and the fun filled night had not even begun.

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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.

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