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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!


 

Team FARA: Team Mustangs for Alison

In July of 2012, our daughter Alison Price was diagnosed with Friedreich’s Ataxia. Alison has experienced increasing neurological changes since that time. She struggles to walk on her own, but keeps trying and uses equipment and help as needed. Unfortunately, her heart is affected as well.

My sister Jill Gould, who lives in Largo, Florida and has been helping different groups raise money over the past decade, quickly jumped on board with our FAmily. We discussed a number of ways in which we could raise money. Jill had gotten into running so we decided we would find a half marathon to run and put a Team FARA together. Alison named us Team Mustangs after her interest in horses at that time. We decided that the Savannah Rock and Roll Half-Marathon in November 2013 would be our first race as Team Mustangs for Alison. Savannah is half way between Largo, Florida and Wake Forest, North Carolina. Jill gathered her team in Florida, I gathered mine from Raleigh, and we met in the middle with our sister Amy, a Georgia resident.

Read more: Team FARA: Team Mustangs for Alison

The FARA Ambassador Program presents FA Hangouts

As we know, FA presents many unique challenges to every day life. Solutions are rarely obvious. In some cases we have found solutions. In others we need guidance.

Using the Google Hangouts application, we will be hosting opportunities for open conversations about FA-related topics with people in the community. The first FA Hangout will be Monday, December 22nd from 7 to 8 pm ET. We will have one Hangout with a different topic each month. The program allows for 10 people to be in a video chat room at a time. We will have multiple Hangouts if more than 10 people sign up, so there is no need to worry about not getting a spot.

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Read more: The FARA Ambassador Program presents FA Hangouts

Luke and Sandy

Name: Luke Cooper

Age: 12

Where do you call home? I live in St. Augustine, Florida with my dad, mom and three brothers, Kade 11, Brock 6, and Kolt 2.

What grade are you in? I'm in 7th grade at R. J. Murray Middle School.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed at age nine in December 2011 after testing at Wolfson's Childrens Hospital in Jacksonville, Florida.

Describe your transition from walking to walker to wheelchair. I can still walk unassisted, but do use a walker at school for balance and sometimes a wheelchair. My teachers and friends at school are very helpful and supportive.

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Read more: Luke and Sandy

Ryelee and Mindy

Name: Ryelee Victoria Burris

Age: 8 years and 11 months.

Where do you call home? I live in Forney, Texas and go to school in Kaufman, Texas.

What grade are you in? 3rd grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having problems when I was 3, but was diagnosed with Guillen Barre Syndrome. My mom took me to a neuromuscular specialist in Houston, TX when I was 5. He did the genetic testing and on May 25, 2011, I was officially diagnosed with FA.

Do you have any known family history of similar symptoms to FA? No.

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Read more: Ryelee and Mindy
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