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FARAFARA Cure FA

FARA Ambassador Program

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

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

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!


 

Pam Shortt

Meet Pam!Name: Pam Shortt

Age: 35

Where do you call home? Ontario, Canada

Relationship status? Do you have children? Married for 13 years and counting. We have one nine year old son.

Occupation/Employment: I stopped working 10 years ago. Now I am a stay at home wife & mom which is busy, busy, busy!

Education: I graduated in 2000 with honors as a Registered Nurse.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having balance and gait issues around 15 years old. Certainly made high school more interesting! It was obvious that there was something not quite right but doctors put it down to me being a klutz. At 19, in nursing school, we were studying the nervous system and practicing performing neurological exams. I failed! I went to a neurologist and he knew it was Friedreich's Ataxia. I was sent for countless tests & finally diagnosed via genetic testing.

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Abby Yingling

Meet AbbyName: Abby Yingling

Age: 19

Where do you call home? I live in a small suburb of Harrisburg, Pennsylvania.

Education: In the fall, I will be returning to York College of Pennsylvania as a sophomore undeclared student. I am exploring my options of being a Recreation and Leisure major with a therapeutic concentration. I want to have a career where I can work with people who have physical disabilities!

Occupation/Employment: Along with being a student, I have a work study position as a desk attendant, as well as a summer job at Michael’s Arts & Crafts as a cashier.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was nine years old, my mom noticed that my left foot was turning in when I walked. I was sent to a neurologist who diagnosed me with Charcot Marie Tooth. It wasn’t until I was thirteen that I was sent to a cardiologist, due to experiencing dizziness, that he suspected something different was going on. Meanwhile, my youngest brother began showing similar characteristics. Finally, when I was 16, both my neurologist and cardiologist sent us to Dr. Lynch. After genetic testing it was confirmed that my brother Chase and I have FA.

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FA Adventure Days 2014

This is the third year in a row I have hosted/made possible FA Adventure Days. I try to make them a way for people with FA and their friends/family to connect, have fun and take on new challenges. As the day approaches, each year, I get nervous and wonder what I was thinking taking it on. Then, the day (or for this year, days) happen and I know exactly why I did it. This year, like past years, new folks were introduced to the FA community and we took on new challenges. I meet new FAmilies, reconnect with old friends and have fun. FA Adventure Days are always great for me, but I wanted to use this blog as an opportunity to see what it meant for some of the other participants…

Day One (Each of the two days had a different group of participants.)

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Jason Drake

Jason DrakeName: Jason Drake

Age: 26

Where do you call home? Franklin, Virginia

Relationship status? Do you have children? No (but quite a few nephews!)

Occupation/Employment: Farmer

Education: High School and some college.

How long have you been living (or known you are living) with Friedreich's Ataxia? 10 years; I was diagnosed in 2004 through blood work.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.

Describe your transition from walking to walker/wheelchair. I was walking independently until I was 21; then I started using a walker to help me get around for a few years, and now I use a wheelchair about 80% of the time.

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Lonestar Benefit Bash Golf Tournement

Hero- a person who is admired or idealized for courage, outstanding achievements, or noble qualities

My family and I, as well as other families affected by Friedreich’s Ataxia (FA), truly believe our supporters who dedicate their time and hearts to help find a cure for FA are our heroes.

The 6th Annual Lonestar Benefit Bash Golf Tournament took place on Friday, June 6, 2014 at the Bridlewood golf course in Flowermound, TX. Usually, this event piggy backs Ride Ataxia Dallas in March, but due to poor weather conditions last year, it was decided to push the golf tournament to a later date in 2014. The FARA staff had a board meeting that day, so the local FA families played a bigger role in contributing to the success of the event.

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