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Emory University FA Patient Symposium 2016

EmorySymp2016 room

For being the first time to have a symposium in Atlanta, I want to preface what got me here and why I am so excited for FA patients.

I grew up in Atlanta and currently live 10 minutes from Emory University. I had never heard of Friedreich’s ataxia (minus the very little I had come across on Google just prior) until my diagnosis 10 years ago by an Emory University neurologist, known to specialize in ataxia, Dr. Chip Wilmot. There are over 100 known types of ataxia. FA is the most common hereditary form, affecting an estimated 1 in 50,000 in the US. Emory University (and Dr. Wilmot as the principal investigator) is one of a dozen sites in the worldwide Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA), actively a part of clinical research and trials to advance treatments and care in FA. A huge thanks to FARA funding the CCRN in FA, this disease is incredibly understood. I am data-obsessed and I do my homework! Research is proving FA is solvable, cure-able. But because it is not widely known, it is underfunded. 


2016FARAFEST1The fourth annual FARA FEST Lei Day 5k was a huge success, despite everything going on the weekend of May 7th. That weekend had us worried about getting supporters out to our event because it was Mother’s Day, there were 5k races for two other charities going on locally the same weekend and there was a big annual fundraising event for Seton House that is also sponsored by one of our corporate sponsors. Who would have guessed it would be our biggest year yet??? When all was said and done the total funds raised almost doubled from just over $30,000 in 2015 to over $56,000 in 2016!!! Our FAmily is now $56,000 closer to a cure!

FARA FEST continues to grow in participation every year and expansion talks are underway. This event is truly amazing and I thank everybody who is involved for their support. There has been quite a lot of work and dedication to make this event what it is today. 

4th Annual Mother's Day 5K Race for Christina

2016Race4Christina1“The sun is up, the sky is blue. It’s beautiful and so are you”. These are the lyrics to one of my favorite Beatles songs as well as the logo for this event. These lyrics came to life at the 4th Annual 5K Race for Christina! Even though it started to rain first thing in the morning, the skies opened up and the sun came out making this year’s race the best year yet! Over two hundred people participated and over $18,700 was raised for FA research and my family couldn’t be more grateful! 

2016 FA Awareness Day Video Clip Campaign

FA Awareness Day is all about raising awareness! We’d like to introduce a video clip campaign to raise the bar on raising awareness and we want YOU to join us! What would you share with someone who’s never heard of Friedreich’s Ataxia? Maybe a quick fact or something a little more personal? Here’s how you get involved...Shoot it! Send it! Share it! And that’s it! Sounds like a simple way to spread awareness, right? Oh wait, maybe there are a few more details…

A Marathon, a Pint and a Slice for FARA

Flatbread BMarathon16April arrived bringing some sunshine, the prestigious 120th Boston Marathon, and our annual Flatbread Restaurant fundraising event. For the past several years my cousin, Jeff Morgan, has been running in the Boston Marathon for Team FARA. The staff at FARA helps Jeff set up a fundraising page, sends him a team FARA jersey, and he's literally off and running. This year he was able to raise over $1,000 and much more FA awareness.

The following night I hosted a benefit at Flatbread Pizza in Bedford,MA; a portion of their pizza sales that night were donated to FARA. This was the 6th year having the benefit with Flatbread. In those short years I have become friends with the manager and staff members who also now participate in my annual charity golf tournament, the Fuzzy Buzzy, every September. I always look forward to this night and this year was no exception. 

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