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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.

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!


 

Remembering Paige Myers, FARA Ambassador

In Honor of PaigeOn Friday, September 1, 2017, my good friend Paige Myers passed away from complications of Friedreich's Ataxia at age 22. I first met her two years ago as we were both FARA Ambassadors. The Ambassador Program meant a great deal to Paige.  Anyone who knew her knows she had strong principles and big goals. She was a passionate advocate for the FA community and the community of people with disabilities; headed to become a pretty incredible genetic counselor. I have huge respect for Paige and all of her accomplishments.

Paige was a such a beautiful and smart woman taken way, way too soon. The time with her I will never forget was at the 2016 Philly FA symposium (my first). I went from table to table meeting and talking to all of my new FA friends, yet she was the only one who came up to me to talk. She truly made me feel special. My love goes out to all of her family and friends.

Paige will be missed but absolutely never forgotten. Despite my own failing heart, I promise to fight this disease and to try to live vibrantly to the end, just as you did.

I love you Paige!

-RJ Mercure, FARA Ambassador.

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Teen Hangouts: Presented by the FARA Ambassador Program

TeenHangouts Sept17The FARA Ambassador Program is excited to announce the first Google hangout for teenagers with FA. it is an hour-long web-based hang out. If you don't have FA, you are not allowed to participate in the hang out. There will also be two or three adult FARA Ambassadors present. The adults will be there just to help keep the conversation safe and going. We have themes for discussion, but they are just to give us a framework we don’t have to talk about the theme. Hopefully it is a way for you to connect with other people experiencing similar if not the same things as you.

The theme this month will be: how is the school year going. The good, the bad, and ugly are all welcome topics of discussion.

When: Thursday, September 28

  • 6-7PM ET for teens ages 13 to 15
  • 8-9PM ET for teens ages 16 to 18


Where: On Google hangouts so if you have access to the Internet and speakers and a camera on your device you can come!

How: You will need to have your parents or guardian sign a consent form (click HERE). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. Then, email farateenhangouts@gmail.com and request the appropriate time. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout.

Please send us an email to either address if you have questions!

See you soon!

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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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Read more: Vlad Ayriyan

Louisiana Screenings of 'The Ataxian'

All around, as far as you can see is flat - green fields and trees dot the distant horizon in all directions. The humidity hugs us all inescapably in its uncomfortable, hot, sticky, unwelcome embrace, like that one aunt at Thanksgiving. Kyle Bryant champions the theater screen as somewhere nearby an alligator sniffs the air and dives back into the brown waters of a bayou. The Ataxian has indeed been screened for the first time in Louisiana.

There were two showings in the state of Mardi Gras parades and boiled crawfish.

Rachel Walker describes the screening in North Louisiana:

The Ataxian opened to a full house at Ruston's Celebrity Theater on Saturday, October 19. We were fortunate to raise over $4,500 and increase awareness with a large audience.

Our efforts to publicize the documentary were given a huge boost by Mayor Ronny Walker (no relation to the Walker family!). Upon learning about FA and the film, Mayor Walker invited us to participate in his weekly radio program. Rick Godley, on-air personality of The Peach 99.3, became another instant member of the FAmily, as he made 2 additional radio broadcasts available to our family. Kyle Bryant also participated in a broadcast on the morning of the screening. 

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Read more: Louisiana Screenings of 'The Ataxian'

FA Hangouts - August 2017

Aug17 hangoutsThe FARA Ambassador Program presents an FA Hangout talking about: FA and adventure. Alison Bouchard will lead this hangout talking about our adventures, intentional or not! Was it riding a zip line, climbing a mountain, or riding a city bus? Tell us about your adventure.

At FA hangouts: we laugh, we connect, we hangout, 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 Tuesday August 29th, Wednesday August 30th, and Thursday August 31st (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. 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.

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.

See you soon!

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