This may not seem like it has anything to do with parenting, but for me it actually does. On December 10th, 2011 at 8:00 pm, The American Giving Awards will premier on NBC. My daughter was diagnosed at 14 months of age with a rare neuro-genetic disorder called Angelman Syndrome. This affects every aspect of her life. She can’t talk, has to take seizure meds twice per day, and requires 24-hour supervision.
Life for children with Angelman Syndrome is a struggle. Imagine taking seven years to learn how to throw a ball, because that is how long it took my daughter to learn. Things that come naturally to most children, have to be taught to children like my mine. The American Giving Awards will highlight five charities. One of those charities is going to be FAST.
FAST stands for the Foundation of Angelman Syndrome Therapeutics. The goal of FAST is to find and fund a cure for Angelman Syndrome. Recently, FAST won $250,000 from the Vivint Gives Back Project, which allowed them to schedule their first clinical drug trial. Actor Colin Farrell has been active in promoting FAST, even announcing the Vivint Contest while on David Letterman. His son James also has Angelman Syndrome.
Please take the time to watch The American Giving Awards this Saturday, hosted by Bob Costas, so you can learn more about Angelman Syndrome and what you can do to help. I am confident a cure can be found in my daughter’s lifetime, and that that cure will unlock answers to individuals who suffer from other genetic disorders as well.
