Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

FARA Ambassador Program

The 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.

Madelyn Frederick

MadelynHey, everyone, I'm Madelyn Frederick and I am 20 years old.

When I was 13, I hit the genetic Jackpot and was diagnosed with a progressive, degenerative, neuromuscular disease called Friedreich's Ataxia. Say that three times fast! It has taken me a while to accept and embrace my life now, 5 years to be exact. I was in denial. I thought if I did not hear, talk, or think about FA it would disappear. Unfortunately, that was not the case and as my progression became more noticeable I knew I could not hide anymore.

Add a comment
Read more: Madelyn Frederick

Brendan Halverson

Brendan HalversonHello! My name is Brendan Halverson, I am 18 years old and live in Battle Creek, Michigan. I just graduated high school and am now beginning life as a college student at Kellogg Community College. I'm planning to study biochemistry and eventually help research FA.

When I was 10 years old, my parents noticed my abnormal walking and took me to the doctor, where I tested positive for Friedreich's Ataxia. I have had to make many adjustments because of this. In 2016, I had a spinal fusion which took me off my feet for a month, but I'm a fighter and bounced back. I have also transitioned from walking to using a walker, to now using a wheelchair.

Add a comment
Read more: Brendan Halverson

Osama Aweek

OsamaHello, my name is Osama Aweek and I am a FARA ambassador! I was diagnosed when I was 11 and now I'm 18, I'll be 19 on April 16th, 2019. I'm from Tripoli, Lebanon (Asia). I failed grade 8 in my school because I was absent 75% of the time and the school wasn't very helpful. They didn't give me more time in tests or more time to study. I had to go to another city, a 3h drive once a week at least to see doctors, I met every doctor in Lebanon. Shortly after my diagnoses and I was diagnosed with cardiomyopathy and scoliosis.

The first few years after my diagnoses I couldn't get along with my disease. I was bullied for the way I looked or how I walked, but here I am today, a SURVIVOR. I couldn't tell anyone what was wrong at school till the end of grade 10, 4 years after my diagnoses. I decided to spread awareness then and I did a presentation about FA at the end of grade 10.

Add a comment
Read more: Osama Aweek

Justin Bolinger

Justin BGreetings from the great state of Montana. My name is Justin Bolinger, I am 40 years old and have Friedreich's Ataxia. My story begins in 1997 which was my first year of college. This is the year that I began to notice that my coordination was off. I struggled to run. This had never been an issue growing up. Throughout my school years, I was on the football and wrestling teams and an active member of the FFA. My summers involved working on the Farm and stacking hay. I was extremely strong. But in 1997 I was struggling to do things that came so easy before. In March of 2002, I was diagnosed with Friedreich's Ataxia. I was told there were no treatments and that I would be fully wheelchair bound in ten years or less.

Add a comment
Read more: Justin Bolinger

Carly Magnuson

Carly MHi, I'm Carly Magnuson and I live in Deerfield Beach, sunny south Florida. I was diagnosed when I was 7 and I'm 28 now. I'm a Christian. I am 1 out of 4 daughters, and the only lucky one with FA. I played T-ball, a little volleyball, swam on the Deerfield Beach Dolphins swim team, and rode horses for hippotherapy, while FA was unknown to me; I thought I had a slight balance problem until I was 11 I found out the grim truth. I had spinal fusion back surgery in 2007 and became a full-time wheelchair user shortly after that. I graduated from Deerfield Beach high school in 2009.

Add a comment
Read more: Carly Magnuson
Page 3 of 12

SHARE

FacebookTwitterLinkedInYoutube
michelle-h.jpg

 

Archived in
  the Ambassador Blog