On October 26th, 2020 our beautiful, bright-eyed Gus was diagnosed with a rare neuro-genetic disorder called Angelman Syndrome. Angelman Syndrome (AS) occurs in 1 in 15,000 births resulting from the loss of function of the UBE3A gene on the 15th chromosome. Those living with AS face developmental delays, speech impairment, recurrent seizures, severe sleep disturbances, GI issues and difficulties with balance and coordination. Despite the challenges we face, Gus continues to take on his days with endless smiles and hugs. His resilience, strength and determination is nothing short of admiral; he is so loving, and so loved by those who know him. Gus is the absolute light of our lives. 

 

Over the past five years AS has become a source of encouragement in the rare disease community. Scientists proved the ability to reverse the effects of AS in animal models, and now, this research is translated into several clinical trials for children living with AS. Though Gus is perfect the way he is, it is our ultimate dream that he and all of those living with AS have the opportunity and access to receive an FDA approved treatment against the debilitating side effects of AS in the near future. To hear his voice, to have him communicate his needs, to be free of sleepless nights and awful seizures...with the current trajectory of ongoing clinical trials we know that this will one day be a reality. But to keep these clinical trials going there needs to be funds, and THIS, is why we fund-raise. 

 

The Go, Gus. Go! Foundation is dedicated to raising awareness about Angelman Syndrome and providing support for special needs families altogether. Through advocacy, education and community support, we strive to create a network of understanding and compassion for those living with Angelman Syndrome and other disabilities. Join us in our journey to make the world a kinder and more inclusive place for our loved ones, and help us raise the necessary funds to keep our dream of hearing our sons' voice a reality.