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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!


 

FARA FEST 2015

The Virginia Beach boardwalk was filled on Saturday April 18, 2015 as hundreds of people seen wearing leis, grass skirts, and even coconut bras joined together to participate in the 3rd annual FARA FEST Lei Day 5k & Flip Flop 1 mile to benefit the Friedreich’s Ataxia Research Alliance (FARA). The event has more than quadrupled in size during its three short years and has raised nearly $100,000 for FARA. There were just over 500 runners for the 5K and nearly 200 for the 1 mile. There were another hundred or more in attendance as well between volunteers and spectators. 

Read more: FARA FEST 2015

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.

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Read more: Natalie Denny

Anytime Fitness Golf Tournament

We were up bright and early on April 11, 2015 as we started off the day at the 7th Annual Anytime Fitness Golf Scramble hosted by Dave LaGree, the owner of several Anytime Fitness locations in the Palm Harbor Florida area.  The event was a great success.  As usual, Dave and his Anytime Fitness colleagues put together another amazing event to raise money for  FARA, Suncoast Animal League and the Wounded Warrior Project. 

In the morning, coffee and bagels were donated by Pickles Plus, while many of the golfers were signing in and waiting for the other participants to arrive.  Once everyone arrived, Dave started off the Scramble with motivating announcements followed by a man playing the bagpipes to send off the golfers.

Everyone enjoyed a full day of golfing, drinking, and eating (although not necessarily in that order!).  Afterwards, the golfers went back to the club house for a great dinner from Southern Steer Butcher, with sides and salad donated by Little Greek and Sugardarlings delicious cupcakes.  There were various drawings and a table full of silent auction items.

This is my fourth year photographing the Anytime Fitness Golf Scramble and every year I’m amazed to see the love and support provided to raise awareness for FARA and the Suncoast Animal League. 

I was proud to be a part this year’s event and I’m looking forward to doing it again in 2016!

Together we’re kickin FA!

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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Read more: Sarah Skelton
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