This is normally my very favorite time of year. December brings with it the FAST Gala and Christmas all in one month. It is a time filled with so much celebration and hope. However, like every parent across the country and around the world, this year I am struggling with the senseless tragedy that befell our nation last week and am finding it very difficult to feel the joy that usually carries me through the holidays. After much thought and prayer, I came to the decision that the best way for me to honor the victims is to make sure I live my life to its fullest every day; to make sure I don’t take a second of my children’s lives for granted; to make sure I tell the people in my life how much they mean to me; to practice simple acts of kindness and to love the work that I do and to do it to the very best of my abilities every day.
There are so many people to thank for making the inaugural FAST Global Summit on Angelman Syndrome a resounding success. The Gala itself was only possible because of the very generous support of our Corporate Sponsors Innovative Mag-Drive, Western Beef, Hulu, Morgan Stanley Smith Barney and Harbinger Strategic. FAST was able to sponsor 300 parent tickets because of the support we receive from actor Colin Farrell and friends and family of Angelman parents. Additionally, FAST was in a position to host the inaugural Education and Science Seminars because FAST was selected as a beneficiary of a class action lawsuit as discussed in this newsletter and because Erin Sheldon, Mary-Louise Bertram, Dr. Dindot, Dr. Segal and Dr. Weeber graciously volunteered to share their knowledge and expertise with our community. FAST treated our parents and individuals with AS to a delicious Sunday Brunch due to a generous sponsorship from Yahoo! Sports and Union Pacific Railroad. FAST was able to provide a complimentary lunch at the Education Seminar due to the generosity of local restaurant owner Jimmy Bannos of Heaven on Seven.
Gala attendees were magnificently entertained by the Shannon Rovers, Trinity Irish Dancers, vocalist Jenna Urbaniak and pianist Beckie Cornelison, all of whom sacrificed their Saturday night and graciously donated their time to perform at the FAST Gala. Hundreds of companies, artists and individuals donated so generously to FAST for our silent auction. Graphic Designers Jeff Steffgen and Harry Bass volunteered their time and talents in designing the summit logo, invite, tickets and program. In addition to being one of our largest sponsors, Innovative Mag-Drive sent an army of volunteers to assist in setting up the space and helping out wherever we needed them. Long-time FAST supporter Leo Bassett arrived early in the morning to set up the live feed and stayed well past midnight, helping us out the entire day. Jason Bernstein of Angel Runners even managed to get the Chicago Trolley Company to donate a trolley to transport our Angel Runners to and from the Santa Hustle and to take Angelman parents sightseeing!! The Renaissance Hotel staff went above and beyond to ensure all of our guests had a wonderful weekend. We are so very grateful to each and every person and business that played a role in ensuring the success of the 2012 FAST Global Summit on Angelman Syndrome.
It never ceases to amaze me how many kind and generous people are attracted to the Angelman community and our cause, from the amazing students at Eastside High School in Greenville, South Carolina, to the couple of strangers that spent time with Angelman parents at the hotel bar the night before the Gala and, after speaking with our fellow parents about why they were there, decided to pick up a $600.00 bar bill for them. People are drawn to us and want to help in any way they can.
FAST will be launching an innovative, global fundraising and awareness event in 2013 to support the FIRE Initiative. This will be a fundraiser that you can invite your family, friends, co-workers and all the people whose lives your children touch to participate in, giving all of them them an opportunity to show their support and do what they can to make a difference in the lives of those with Angelman Syndrome.
With your support, commitment and dedication and by identifying creative sources of revenue such as the Vivint and Chase contests, Eastside’s Spirit Week, and being selected as a beneficiary of class action lawsuits and estate settlements, FAST, in just four years, has been able to fund over $1.35 million in scientific research solely focused on developing treatments for the symptoms of Angelman Syndrome. With the help of spokesperson and actor Colin Farrell, FAST has made tremendous strides in raising awareness of Angelman Syndrome. However, our job is far from over and we need your help. Please read about the FIRE Initiative in this issue and ready your personal networks to support this groundbreaking project through the global fundraiser being launched in 2013. Those looking to support the FAST mission right now can do so by visiting www.CureAngelman.org.
On behalf of the Board of Directors of the Foundation for Angelman Syndrome Therapeutics, I thank you from the bottom of my heart. We wish you all a very happy and healthy holiday season and a New Year full of joy, success and milestones.