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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!


 

Funny 4 Funds 2016

2016Funny4Funds1Last July, nearly 200 people packed into a hot community hall to support the first Funny 4 Funds comedy show to support FARA. This year, the show was upgraded to the beautiful Crestwood Country Club in Rehoboth, MA, where the 200+ guests enjoyed sunset cocktails after a long week, a delicious dinner, hilarious comedy show, and exhilarating auctions. Proceeds from the event raised over $13,000 to support FARA! That’s a significant contribution to fund FA research and advance efforts towards a cure. 

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New Jersey Seaside Stride 2016

2016 Seaside Stride smallThe New Jersey Seaside Stride was held on Saturday, May 21, 2016 at St. Catharine's Church in Seaside Park, NJ. By no coincidence this was also FA Awareness Day! FA families from all over the northeast head to the jersey shore to help raise awareness and funds for FA research. Even the threat of bad weather this year did not keep people away. Our crowd reached is usual 200 attendees. We start the day with breakfast and coffee, then a relaxing stroll along the shore on the Seaside Park and Seaside Heights boardwalk. After the walk, we meet back at the Church to enjoy a delicious lunch hosted by Carrabba’s Italian Grill of Bricktown, NJ, and take a chance at winning an item from over 50 basket in our gift auction. Music and emcee is provided by Billy Mann productions. It truly is a day full of fun and family and we invite anyone to join us. 

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FA Hangouts - June 2016

The FARA Ambassador Program presents an FA Hangout talking about what is your favorite tool to make life with FA easier? Is it your super eight pole? Is it your wheelchair cushion? Is it your slow cooker? Maybe you just want to learn what works for others so you can try? (If you could bring a link for purchasing your favorite tool, that’d be great!)

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.

Hangouts will be held Wednesday June 29th and Thursday June 30th (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at (new time) 8-9:30 PM EST both days (just one hangout per night, but it is longer). More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangouts to 15 people. 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. 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. 

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Chrissy Thomas

ChrissyThomas1Name: Chrissy Thomas

Age: 30

Where do you call home? I grew up in Atlanta, Georgia and now live in Greenville, South Carolina

Education: B.S. in Family and Consumer Science from the University of Georgia (Major: Child and Family Development)

Who do you live with? My husband, Nick

What's a typical day for you? My days are never routine, but typically I workout every morning. My husband Nick and I own a food truck and we work at least five days a week for lunch and dinner shifts. I work the window, and help with anything else Nick needs. I am usually exhausted after these shifts, but I try to keep a good balance in my life of hanging out with friends and family.  Add a comment

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The Ataxian in Athens

Private Screenings of The Ataxian 
Athens, Georgia | May 2016

Ataxian Atlanta1

It was a FARA-packed weekend, with the Emory University FA patient symposium the day before and the first rideATAXIA Atlanta hours earlier. It surely felt like every effort was leading up to this. I drove an hour and a half east of Atlanta to Athens, Georgia with my husband and a friend who also has FA. I grabbed a Kleenex from the car and shoved it into my purse, just in case. 

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