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Friedreich's Ataxia Awareness Day 2017

FAAD 2017 graphicA picture is worth a thousand words. Make a simple but bold statement on FA Awareness Day (Saturday, May 20) with a picture that says it all! #CureFA. It's what we're hoping for and working towards. It's our rally cry, our motivation, our mission, our goal. Join us and let's tell the world...TOGETHER let's #CureFA.

We'd like to introduce a #CureFA photo campaign. It's easy to participate, and we want YOU to join us! No matter where you are in the world or how you are tied to the community, our common collective goal is to #CureFA. Here's how to get involved...find a photo setting that is representative of your geographical region, your work, your favorite hobby or your community; take a photo of yourself with the #CureFA printout sign (link below) or create your own; send it to stephanie.magness@curefa.org Set it! Snap it! Send it! Share it! 

So, how do you participate? 

A Night to Fight FA

Hill BurrowsOn April 1, 2017 The Burrows Hill Foundation held our inaugural 'A Night to Fight FA' auction fundraiser. We formed the foundation about six months ago and immediately began thinking of what we could do to help the FA community. We decided on an auction fundraiser and got to work right away. With the help of countless friends and family members and amazing support from the community, it was a smashing success.

Our 350 guests were greeted at US Naval Academy Football stadium by a 1976 VW bus that has been converted into a photo booth. After some fun photos, guests headed up to the top of the stadium to the Akerson Tower where they were treated to a stunning view of the Navy Football Stadium and the city of Annapolis. Our silent auction included 75 items and our live auction included trips to Disney World, Deep Creek Lake, Sanibel Island, Easton Maryland and the British Virgin Islands. In addition, we had a gorgeous hand-made wooden kayak, that was built specifically for this event. Ron Bartek agreed to speak at the event and was able to share some knowledge about FA with an audience that was largely unfamiliar. 

2017 FArm to Table

2017FarmtoTableAt the end of a wonderfully successful Farm to Table fundraising event, Ceron, the event hostess walked by and proclaimed, "I love humans." It was a fleeting moment, but Ceron is right. In my role at FARA, I get to see the best of humanity- a contagious energy that when faced with challenge surges back to meet and push against that challenge. It is an energy that shows itself in the form of a boy living with FA- Gavin- who though he falls, always gets back up. Gavin's energy inspires his Aunt Ceron and Uncle Donald to open their farm and their home to create a magical fundraising event. Ceron and Donald's generous spirit and energy draw in hardworking volunteers, talented Chefs, toiling farmers, gifted musicians, and generous supporters. This collection of awesome humans create a swell of energy in the form of over $30,000 raised for research and an overwhelming feeling that one is never alone in the face of hardship. Whenever I'm lucky enough to be in the presence of such energy, I am left awestruck and grateful. Thank you! I'll leave it to Ceron to recognize all of these awesome humans by name. ~Felicia DeRosa, FARA Program Director 

9th Annual Anytime Fitness Charity Golf Scramble

2017AnytimeFitnessThe 9th Annual Anytime Fitness Charity Golf Scramble was March 11th 2017. Anytime Fitness was kind enough to invite FARA back again as one of the charities for the event. This event also benefits the Suncoast Animal League and a local friend battling Stage 4 cancer.

It was certainly a beautiful day for golf, about 76 degrees and not a cloud in the sky! We had 126 golfers in attendance and raised over $10,000. We began the day with Pickles Plus providing us a box sandwich lunch, which was delish! Once the announcements were made, National Anthem was sung, the players were on their way! 

2017 FARA/University of Iowa FA Patient Symposium

2017IowaSymposium 2Upon learning a FA Symposium would be just a state away we knew as a family we had to attend. Our daughter Mekayla had reached out to one of her friends that had never been to a symposium, and we were delighted Emma Joyce and her parents were able to also make it down.

The morning started out with a showing of “The Ataxian”, and it brought home so many different points. From Sean and Kyle experiencing physical struggles during the bike race and sheer exhaustion, to the passion of John and Mike (the other riders on the team) to make up time during the race. The movie showed from the bikers support crew, to the young families featured in the film, it’s a tight knit FAmily with one goal in mind. 

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