Florida Angelman Family Fundraiser for FAST

Angelman Families get together for a lunch and social fundraiser for F.A.S.T at BJ's Brewery and Restaurant in Tampa, Florida.

On Saturday November 5th many Florida Angelman families came together for a great cause and to hear from Dr. Weeber.  The adorable Angels ranged in ages from 3-21.  After the Angelman walk last May, I had many parents suggest to me that they would like to spend more time with other families and socialize.  So, I kept that in mind.

Over the summer there was a Vivint voting contest for a charity to receive $250,000.  The Foundation for Angelman Syndrome Therapeutics (F.A.S.T) had entered and as votes came in, the excitement was building.  Our AS community really came together to rally for votes.  We reminded each other for our daily vote and posted on the Facebook "walls" of our friends and family or anyone who would listen.  I know that I told all of Nathan's therapist & Dr's and had them voting.  As I learned that this win would afford FAST the opportunity for the first Human clinical trials, I became excited and determined!  We all did and it felt great. We were all working together to get our kids the cure they need and at the same time, we grew so much closer as a community!  FAST WON! I was laughing and crying with joy as I watched the ceremony online.

It was then that I knew... We had to get together to celebrate as a community and who better to join us than our very own Floridian - Dr. Weeber!   I found BJ's restaurant who supports charities and would donate proceeds to F.A.S.T.

It meant a lot for me to be able to meet Dr. Weeber.  Shortly after my son Nathan's diagnosis my husband found the online article of Dr. Weeber's research of curing AS in a mouse.  It was that article that gave us HOPE.

Just days before our lunch, the highly anticipated F.A.S.T newsletter came out to answer many of our questions about the upcoming clinical trials.
click to view: http://www.cureangelman.org/newsletter/NewsLetter_November2011.pdf

40 people had RSVP'd and told me how excited they were to see all the other families.  We ended up having more people in attendance than expected!  We had so much fun!

*We introduced our Angels to the group

*Shared www.MyAngelman.com (a website created by Angel Dad Troy Davis for our AS online community)

*Gifted Chewy Tubes to all the Angels from www.ChewyTubes.com donated by the company.  You can buy these favorite Angel toys on Amazon.com

Dr. Weeber spoke to the group and answered questions.  Everyone was so grateful to Dr. Weeber and his staff members for taking the time to come out and visit with our Angels and share his research with us.
The families are so excited about the trials that will be here in Tamp and ready to sign up their Angels. They are eagerly awaiting the details of who will be eligible, which we understand will be announced after everything is approved and ready to began.

It was such a great time and my heart fills with so much love when I am in a room with so many Angels and their families.

Thank you to Dr. Weeber, Joe Greico, Justin Rogers Ph.D and all the Angel families who came out to Tampa.

Thank you letting me share with you,
Lizzie

(More pics below)

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