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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.

FA Hangout June 2018

FA HangoutsThis month's hangout will be led by RJ Mercure. The subject will be, "How has FA affected your career path."

At FA Hangouts we laugh, we connect, we hang out, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every Hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 PM EDT each of the two days. Each meeting can host 15 people now!

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

Hangouts will now be held on WebEx! You do not need an account. An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

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Vlad Ayriyan

VladAyriyanHello, my name is Vlad Ayriyan, I am 24 years old. I was diagnosed when I was 9 years old and was wheelchair bound at the age of 16. I live in the best city in the world, San Diego. I was born in Armenia and that is where my family is from. I used to love playing sports, especially basketball but as the disease progressed I had to adapt to not being able to play the sport that I love. I had to adapt to a new way of my love for sports by studying the game.

I have a sister who is 19 years old and very supportive of me. She is unaffected by the disease but she is still a carrier. Knowing this definitely, helps me want to put an end to this. I do not want to only do this for myself but for those affected by this disease, along with their family and the people who support them.

This disease taught me a lot of lessons about life, but I think I have learned enough and it is time to put an end to this and find a cure. 

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Jacob Ferguson

JacobFergusonMy name is Jacob Ferguson. I am 22 years old and live in Montgomery, Texas with my family, including my 17 year old brother who also has FA. I am working on a business degree at LoneStar College and Sam Houston State University. I love to work out and work with a trainer at our local gym a few days a week.

I am always up for adventure. We just returned from a trip to Mexico. We had a blast! We were able to scuba dive in the resort dive pool, parasail over the ocean, and deep sea fishing all for the first time!

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Matt Lafleur

MattLafleurName: Matthew Lafleur

Age: 31

Where do you call home? Opelousas, Louisiana

Education (degree[s]): BA in English, MA in general mental health counseling

What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less. 

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Nygel Lenz

NygelLenz1My name is Nygel Lenz, and I am 41. I live in Florida with my beautiful and amazing wife, our lovable pug, and our crazy fish. In short, I began having Friedreich’s Ataxia (FA) symptoms at 11; was certain that my balance was a problem at 15; and finally diagnosed at 19.

Growing up, I was a fairly typical, active boy. I played sports like football, soccer, basketball and baseball. I also loved my bike and skateboard, especially building crazy ramps and jumping them or doing tricks. Basically, I was outside doing some sort of activity whenever I had an opportunity.

My first FA symptom was scoliosis at age 11. I had spinal fusion to help straighten my back at age 15. As soon as I got up and started walking again, I realized that my balance was different. (In hindsight, there were other signs that I had ataxia, but it was obvious after that surgery.) Walking straight, having my feet always go where my brain directed them became an issue. It scared me!

I began seeing a neurologist after the surgery—at the beginning of my sophomore year in high school. I went all the way through high school undiagnosed. 

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