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Angelman Syndrome Fundraiser

Angelman Syndrome Fundraiser


Shortly after his first birthday, Cameron Weber was diagnosed with Angelman Syndrome. Angelman Syndrome is a rare genetic disorder, caused by a deletion on the 15th chromosome, that causes delayed development, problems with speech and balance, intellectual disability, and sometimes seizures.  The initial diagnosis is grim.  Many families are told that their child will never walk or talk. For Cameron, normal movements such as crawling, standing, walking, or even playing with toys are much more difficult tasks and have required many hours of various therapies, about four hours each week. With his hard work and determination, we know that he will walk and one day he will communicate with us better whether it be with his own words through the use of adaptive devices.  The community we joined is one of the most encouraging communities I’ve ever experienced.  While there is no known cure for Angleman Syndrome, researchers are working on potential cures and other forms of therapeutics that could improve the quality of life for those with the condition. Angel families stay positive and continue to hope for a cure that will come.  The Foundation for Angelman Syndrome Therapeutics (FAST), started by an Angel mom, is one organization that is devoted to funding the research that will provide groundbreaking therapeutics for Angelman kids so that they can improve their quality of life.  Research has come such a long way.  Three to five years ago, research studies and clinical trials were few and far between but because of the work of the FAST community, there are many active clinical trials and many more right on the horizon.  FAST is very important to our family and has provided us the hope that we need, that one day, Cameron will be able to do anything he wants to do.