On 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!
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:
The Ambassador Blog
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!
Linda Johnson
- Details
- Category: Meet the Community
Name: 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! :)
6th Annual Swing Away at FA
- Details
- Category: Activities & Events Blog
On 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
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- Category: Activities & Events Blog
Columbus 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
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- Category: Hangouts
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