What do you do when you are told your child has a rare and debilitating condition and that the science suggests it can be treated or cured, but the researchers don’t have enough funding? You form an army of friends, relatives, fellow families, volunteers, business men and women, strangers and anyone willing to listen…. to unite and fight back!
That is exactly what happened in Boston, Massachusetts on Friday, September 27th, 2013 at the 1st Annual “Lite the Night on FIRE” event to benefit the Foundation for Angelman Syndrome Therapeutics (FAST). FAST recently launched its most aggressive and innovative research program to date to find treatments and a cure for Angelman Syndrome (AS); the FAST Integrative Research Environment or FIRE. Thus, on September 27th, we Lit the Night on FIRE!
Over 100 individuals attended this unique fundraising event to learn more about the promise in AS research and the ability to accelerate our path to a cure if adequate funding is raised to support the scientists focusing on this disorder. As parents of individuals with AS, we imagine the possibilities every day. We know we are close to a cure and with proper levels of funding, we will change lives.
The event was emceed by AJ Crozby from 92.5 The River. The program featured videos on the search for a cure, and speeches from FAST Chairperson Paula Evans and Chief Science Officer Dr. Rebecca Burdine. A silent auction was held during the event with wonderful items donated by local businesses and individuals.
The event signature included glow necklaces and glow wands which sold at levels varying from ten dollars to ten thousand dollars. The glow necklaces and wands illuminated the room and inspired the guests to take part in the hope and optimism that is plentiful in the Angelman community. The enthusiasm generated carried over on the dance floor where attendees enjoyed the amazing Denise and Tony Walstra and the band FUSION.
The goal of Lite the Night on FIRE was to inspire people to join FAST on this amazing journey towards finding treatments and a cure for Angelman Syndrome. No single act demonstrated the impact of the event more than when the banquet manager of the venue approached FAST Chairperson Paula Evans and explained that his staff was so moved by the speeches and the cause, that they decided to pool all of their tips from the night and donate them to FAST. We were beyond touched by their generosity.
We received so much encouraging feedback from people inspired to do more; offering to reach out to contacts that may be able to help spread our story, wanting to remember FAST at tax season, and anxious to approach employers about matching gifts. So far, we have raised over $35,000 and counting for the FIRE research project which has already identified additional potential treatments for AS.
Lite the Night on FIRE was successful due to the generosity and support of so many, including; Jamie and Meredith Tedford from Marblehead MA; Jen Corkery from F.W. WEBB Company with a $5,000 Major Sponsorship; event emcee AJ Crozby from 92.5 The River; Denise and Tony Walstra and the band FUSION; guest speakers Paula Evans, FAST Chairperson and Dr. Becky Burdine, FAST Chief Science Officer; Chuck Crush; all of the amazing volunteers from the Boys and Girls Club of Concord, NH; Desiree Smith; Serena Quinlin; Katie Jarvis; Nicholas Levergood; Ashley Jones; all college students in the Boston area; and last but not least, Amy Girourd and Judy Swanton for their passion and dedication in helping organize this event alongside me-it was a tremendous team effort!
We can’t thank you all enough for being a part of the first annual Lite the Night on FIRE event to benefit FAST. We will see you in 2014 when we light Boston on FIRE even bigger and brighter than ever before!
– Danielle Pinders
