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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!


6th Annual Swing Away at FA

2015SwingAway1On Saturday, October 24, one of the largest grassroots fundraisers for FARA was held for the sixth year in a row. The Stacks family helps host a Wiffle Ball tournament and a “Family Fun Day” complete with bouncy houses, pumpkin painting, and a homemade, hearty barbeque lunch to raise research dollars in honor of their two children diagnosed with FA; Hannah and Austin Stacks Austin Stacks.

The community in this northern Georgia town of Dawsonville has been relentless in supporting the search for treatments and cure. Mike and Sue Thomas have generously held the event every year on their beautiful property Cabin Fever Farm. Everyone has left such a lasting impression, working incredibly hard to collect donations and items for the silent auction and raffle—to include successful ticket sales for the second year to raffle off a $1,000 travel voucher and also a week-stay in an all-accessible 1 in a Million cabin in the Smokey Mountains. Thank you is not enough. 

CHOP Symposium 2015

2015CHOP1Columbus Day weekend is my favorite weekend of the whole year. It is the one weekend a year when I go to Philadelphia and have the opportunity to see and hang out with my FAmily.

This Columbus Day weekend did not disappoint. On Saturday, my mom drove my brother, Chase, and I out to Philly so I could attend the Ambassador training program. This was so cool because instead of meeting and talking over WebEx, the FARA Ambassadors were able to sit around a table and learn more about FARA. One amazing thing that I learned was that FARA’s budget for 2015 is about $5 million. However, a mere ten years ago the budget was about $500,000! It amazes me how much FARA has grown in such a short amount of time. A majority of it can be attributed to grassroots fundraising along with rideATAXIA and the Energy Ball.

FA Hangouts November 2015

The FARA Ambassador Program presents an FA Hangout discussing bullying and how you handle (or handled) it. You don’t have to have been bullied or be being bullied to participate. Bullying doesn’t just happen in the schoolyard! This hangout is for everyone with FA who has experienced bullying, is interested to learn other people handled bullying, and wants to be supportive of other people with FA who have experienced bullying.

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.

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday November 18 and Thursday November 19 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like… Like this time when the last Thursday of the month is Thanksgiving) at 7 & 9 PM EST both days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone. 

Rachel Conger

RachelConger1Name: Rachel Conger

Age: 19

Where do you call home? Wilmington, Ohio

Education (degree(s): I graduated from Wilmington High School in 2014. I'll be starting art classes soon.

What is your relationship status? I'm happily engaged to my love, Eric. April 30th 2016 is the big day!

What's a typical day for you? Wake up and do what needs to be done. 

Dillon Head

DillonHead1Name: Dillon M. Head

Age: 19 almost 20 (December 19)

Where do you call home? This is difficult because my parents are divorced and I’m close with all of my family members. However, I live with my mom and my stepdad. We are currently in the process of selling and moving to a home that was built handicapped accessible. It is all one level and is a bigger house and will be easier to get around because it doesn’t have stairs. I live in New York but I have family and friends who I count to be family; so I have to say my home is the world!

Education (degree(s): I graduated high school in 2014, which feels like forever ago already. I went to a small town school, which had 250 students from Pre-K to 12. Brookfield Central School is where I have my roots planted, but my tree is still growing. My future goals are honestly possibly never going to be easy to stick to just one thing. I have what they call: Peter Pan Syndrome, which has been a blessing. I’m currently enrolled in the New York Institution of Photography, which is all online. It has been great and I have been learning a lot more. Photography is one of my passions and will always be one with or without FA. One of my other goals is to get a degree in some sort of education. I love kids, but elementary school is not my calling. Teaching 7-12 or even higher education is more what I’m leaning toward. In January, I will be going back to college in Syracuse, New York; SUNY Onondaga Community College. It has not been easy, but I will do it and encourage anyone else with FA to go, if you're able to. When it comes to FA, it can add stress, depression and frustration to anyone on a “good day”. However, I don’t want it to “take over my life” anymore and I’m done having that feeling. It’s easy to get, especially if you just stop pushing and giving up. YES! FA is not easy to deal with for anyone, but I have come to realize that it can’t control me or my future. I have gained a lot more HOPE over the past 6 months then I have had the past year! 

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