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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!


FA Hangouts - December 2015

The FARA Ambassador Program presents an FA Hangout talking about our holidays and New Year’s Resolutions. Join us for some fun conversation between Christmas and Hanukkah and the New Year. We’ll talk about our holidays… things related to FA or not. Feel free to wear your favorite or goofiest holiday sweater or hat!

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 Tuesday, December 29 and Wednesday, December 30 (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 New Year’s Eve) 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.

Tiffany Rose Gambill

TiffanyGambill1Name: Hi, I’m Tiffany Rose Gambill.

Age: I am 25, I’ll be 26 on December 21st.

Where do you call home? I live in Bridgewater, Massachusetts, currently with my parents, but we are building a wheelchair friendly apartment onto the house, so that will be my little humble abode.

Education (degree(s): I graduated The University of Massachusetts Dartmouth with a bachelor’s degree in Women Studies. While in college I also went to a community college near home where I got certified in Sign Language I-V and certification in Veterinary Assistance. Both certificates, of which I never used. I also did the Bridgewater Citizens Police Academy, which was very interesting, I learned a lot, bonus I got to see 3 people tazed! After college I did many trainings in Domestic Violence, which led to a semester in Washington DC at The Washington Center and an internship at Becky’s Fund which helped with victims of DV. When I came home I interned at the Plymouth County District Attorney’s office. Then in September of 2014 I got a job in my town at a company that trades precious metals around the world. I have been there a little over a year. I work part time, which is really helpful for my energy levels. At work I do a lot of filing, data entry and now I help also in the HR department. So nothing to do with my education background, but they continue to pay me so I’m not complaining! I do still love to continue my education, knowledge is a powerful recourse for everything so why wouldn’t you want to learn as much as possible? 

FArm to Table Dinner

I have been in Tampa, FL for FArmtoTable1a few months now and Saturday, November 7th was one of the best days I have had here. Ceron and Donald hosted us at Buti T Ful Farms in Plant City for a wonderful evening.

The FArm To Table event included an extravagant dinner, silent auction, live music presented by Erin and The Project and lots of wine and beer. The renowned Chef Stefan from Mahan's prepared a scrumptious meal for 120 people. We had steak, chicken, and sweet potatoes, which were preceded by one of the best salads I have ever had. 

Costume for a Cure!

CostumeforaCure1On Sunday, October 25th, three friends and I got in costume and made the 2 ½ hour drive to St. Clairsville, OH to attend the FA Halloween costume bash. Other than rideATAXIA Philly (which I went to for the first time this year), I’ve never been to a FARA fundraiser, so I was very excited! Additionally, I’m at the age where we certainly celebrate Halloween, but simple costumes are perfectly sufficient. I was excited to have a reason to go all out with my costume! 

Linda Johnson

LindaJohnson1Name: Linda Johnson

Age: 53

Where do you call home? Cazenovia, NY (Central New York)

Education (degree(s): BS Industrial Engineering

What is your relationship status? Do you have children? I am a wife and mom of two kids, ages 21 and 18.

What's a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) A typical weekday for me includes exercising, showering, feeding the animals (dog, cat, rabbit, fish), mowing the lawn (unless it’s covered in snow!), cooking, laundry, sending a care package to the kids, organizing/cleaning (I think I’m a little OCD!) … typical stay at home stuff! There is no typical weekend for me … traveling, dinner with friends, company over, etc. … it’s all good! Whether it’s a weekday or weekend, there is always time for a 25-minute nap followed by a cup of coffee! :)

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