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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!


Kendall Harvey

“Que sera sera, whatever will be, will be,” has become my new motto since I was diagnosed withFriedreich’s Ataxia (FA) at the age of 25.
 
I grew up in Katy, Texas – a suburb of Houston. For as long as I can remember, I was always very active: swim team, cheerleading, softball, volleyball, track, and any other sport I could participate in. My childhood was a very happy time and I was just like every other kid my age.
 
I met the love of my life, Kyle, during my sophomore year of high school. We dated throughout high school and college. On the Fourth of July in 2008, he proposed to me on the ferris wheel at Niagara Falls. Naturally, we started planning the wedding right away. 
Read more: Kendall Harvey

Joseph Mullaney

Hello everyone, my name is Joseph Mullaney and I am extremely excited and honored to be apart of this program. I am 20 years old from Leominster, Massachusetts. I am a sophomore at Quinnipiac University in Hamden, Connecticut. At Quinnipiac, I am apart of a Fraternity, named Sigma Phi Epsilon, a member of the Student Government Association’s Executive Board as the Vice President for Public Relations, and a member of the Orientation Leadership Program, which helps welcome incoming students to Quinnipiac.
 
At home, I am one of four children from our parents, David and Brenda Mullaney. I have a twin brother named Sean, a 25 year old sister named Kaela, and a 26 year old brother named Ryan. Kaela and myself have FA and Sean and Ryan do not. However, Sean and Ryan always go out of their way to help Kaela and I, and will do anything to see this disease end. 
Read more: Joseph Mullaney

Wenses Reyes

This Meet the Community interview was originally published in January 2015. Wenses is now a participant in the

FARA Ambassador Program.

Name: My full name is Wenseslao Reyes. I go by Wenses though. My friends call me Yayerr; a nickname given to me by my baby brother in 2007.

Age: 21

Where do you call home? I’m from Portland, Oregon. Actually, I live in Aloha. But it's close!

Occupation/Employment: I don't have a job. I'm job hunting, but I'll probably wait until I finish school. I am also looking for an internship to further my skills/experience. Right now, I attend PCC. It's a community college. I'm working on transferring to PSU (maybe) and I'm going to major in business, accounting to be clearer. I love numbers! I'm also good with money! I'll probably study personal finance too. But, who knows.

Read more: Wenses Reyes

Jacob Tompkins

This Meet the Community interview was originally published in November 2014. Jacob is now a participant in the 

FARA Ambassador Program.

Name: Jacob Tompkins

Age: 34

Where do you call home? Tivoli, New York

Occupation/Employment: I own and operate a recording studio in NY.

Education: Red Hook High School, Bard College.

How long have you been living (or known you are living) with Friedreich's Ataxia? I began showing symptoms at 16. All of my teachers and peers would accuse me of being drunk every day. I was diagnosed when I was 22. A few days before I left for a nation wide tour with my band.

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

Read more: Jacob Tompkins

Dave Arnold

“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
 
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently. 
Read more: Dave Arnold
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