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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. 

This year was extra festive as we had some FA brothers from outside Hampton Roads join the local FAmilies at FARA FEST. Myself, Luke, Stacey, Nicole, RJ and Jason were thrilled to host Robert and Alan Hopkins and their families and Dillon Loomis-Head and his family. I love spending time with FAmily – there’s nothing like it!

2016FARAFESTDillon, Robert and I worked the crowd with giant photo frames – a new addition to the event this year and a big hit. Kids enjoyed the inflatable hoops and families gathered for music by the Tiki Bar Band, sno cones and of course delicious food from Cheeseburger in Paradise. Stacey and I helped award finisher medals with the Parrothead Club who has increased their support of the event, too.

The FARA FEST Parrot made a re-appearance this year. He’s a crowd pleaser for sure. Adults, kids and teams love the FARA FEST Parrot. He doesn’t have a name and we’re thinking we should have a contest for a good one! He told me he wants to come to rideATAXIA Philly. Kyle, are you listening? I’m not sure my dad would like that though…there’s apparently a picture of him kissing my mom floating around social media!

I was honored to have an opportunity to speak post-race and appreciate the people who came out to support, tell them about the great things upcoming in the FA world, and present an award to two special people from our biggest corporate sponsor. The fourth annual FARA FEST was big, but we plan to make next year’s FARA FEST even bigger.


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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.
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:


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