According to the FAST website “Angelman syndrome (AS) is a rare neurogenetic disorder that affects approximately one in 15,000 people – about 500,000 individuals worldwide. Symptoms typically include difficulty suckling and eating, gastrointestinal issues, delayed crawling and babbling, balance and motor impairment, and seizures.”
This year I had the absolute pleasure of attending the FAST Global Summit & Gala. I was completely inspired by the families, and their children in attendance of the conference. The speakers were incredible and the event just showed how powerful a community of people can be as a whole.
The FAST foundation has really helped push research for treatment and cure for Angelman syndrome. This YouTube Video, demonstrates how children with AS can receive gene therapy to open up their paternal gene and potentially cure AS.
Clinical trails for human treatment are underway and we are hoping that in 2020 there will be a therapeutic cure for AS. The reason this is very near to me is that I currently see four children with AS who do not use verbal speech to communicate. Instead they use ASL signs, AAC devices and gestures to communicate. I am hoping that with the research and development of this new gene therapy these children will get the chance to have verbal speech.