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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!


 

Donovan Simpson

Name: Donovan Simpson

Age: 18

Where do you call home? Yonkers, New York 

What grade are you in? What is your dream job? I’m a senior in high school and my dream job is to work in game design.

Who do you live with? My Mom and Dad.

What's a typical day for you? I go to school and I come home :) 

How long have you known you are living with FA? I started showing symptoms when I was like 5 and was diagnosed at six. 

Are there any others with FA in your family? No, just me. 

Describe an adaptation and/or transition you have had to take due to living with FA. When I was about 10, I  broke my right arm. Ever since then, I have been in a wheelchair.  

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FA Hangouts

Come join us for FA hangouts! Once a month the Ambassador Program hosts a series of online hangouts for people with FA to talk to each other for an hour and a half. We pick a topic that will be relevant to people in the FA community. Topics include things like exercise and fitness, setting and pursuing your goals, or clinical trial participation. Sometimes we invite guests from the community to share their experiences and personal expertise.

We like to keep a relaxed and friendly atmosphere in the hangouts. We have plenty of regulars, and there are always new faces, as well. You can come in with lots to say or just sit back and listen to other people's stories. FA is rare, but the hangouts are a great opportunity to connect with people you wouldn't otherwise get a chance to meet. We get people from all over the United States and even around the world who can all relate to each other's experiences. We laugh, we connect, we hang out, we learn from and about each other...it's a lot of fun!

See what other people have to say about hangouts about hangouts!

Hangouts usually happen at (new time)  8PM - 9:30PM Eastern on the last Wednesday and Thursday of each month (just one longer hangout per night). Check the Ambassador Program blog for each month's topic or see our schedule of upcoming hangouts. To sign up, send an email to fahangouts@gmail.com with the times you can attend. You will get an email with an invitation link to join the hangout. Hangouts are hosted on Google+ (get a free account at plus.google.com) and should work with any webcam and every major web browser.

 

 

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FARA Family Fun Day Fundraiser on the Farm

 

January 17th, 2015 was a truly amazing day at Buti T Ful Farms, in lovely Plant City, Florida.

We hosted our first ever fundraiser with a goal of $5,000.00 in our mind to help fund a cure for this horrible disease called FA that affects our amazing nephew Gavin Lambert. The day started out with perfect weather and tired cooks as my brother and Gavin's dad had been up all night BBQ'ing for the event. Then it happened...the petting zoo arrived, the horses and ponies arrived; the bounce houses and the tents and most importantly our volunteers.

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Allison Dana

Allison DanaName: Allison Dana

Age: 35

Where do you call home? Burlington, Vermont

Relationship status? Do you have children? Married for four years with three year old identical twin girls.

Occupation/Employment: Stay-at-home Mom.

Education: Bachelor of Science in Nuclear Medicine Technology.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was 19 and a junior in college when I was diagnosed although looking back, I was showing symptoms about 16. Before I had the genetic test, I was taking Anatomy. The last section of the class was CNS (central nervous system). When I read the description of ataxia, I knew that's what I had. I didn't know what kind but found out it was FA a few months later when I got the results of the genetic test.

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MTC Gratitude

We have learned about many FA community members through our Meet the Community blog posts. Our contributors have: made us laugh; made us cry; given us wisdom; and reinforced our belief that people with Friedreich’s Ataxia and their friends and family are strong individually and even stronger together. Most of all we know how to live with FA better because our contributors thoughtfully shared themselves. To thank them we have shared our favorite lines from their posts (In no particular order.). Did we miss yours? Share it with everyone in the comment section below. We can’t wait to read the future Meet the Community posts.

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