Posted on April 12, 2017
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
I always think of this quote when I think of Ben & Lori Ray’s Bash for FAST event. For the past several years, Ben, Lori and Kellan’s family, friends and supporters have been raising the funds needed to replace the one gene that Kellan is missing, causing Angelman syndrome.
In 2015, The Kellan Ray Grant was established with proceeds from the Bash for FAST to verify a gene therapy approach to the treatment of Angelman syndrome using two unique methods of gene delivery to the central nervous system. I am delighted to announce that in less than two years time, we have succeeded in this endeavor and are now preparing to move these advances towards clinical trials!
Developing a gene therapy for a debilitating, neurological disorder like Angelman syndrome is a very complicated, expensive process. Thanks in large part to the generosity of the Ray’s supporters, we now have the knowledge, technology and expertise to do this. FAST has partnered with several leaders in the gene therapy field to develop a gene therapy specifically for Angelman syndrome, but we need your support now more than ever.
FAST is the largest, non-governmental funder of Angelman specific research, committing over $10 Million to gene therapy alone. With continued support, we expect to have gene therapy in clinical trials within 24 months.
FAST’s goal has always been simple; to create a better life and brighter future for Kellan and the thousands of children like him. Kellan’s supporters have played a significant role in helping us realize this goal and the entire Angelman community is so grateful for their efforts and generosity.
I look so forward to seeing you on May 20th and sharing more of the amazing advancements your support has made possible. On behalf of the Board of Directors for the Foundation for Angelman Syndrome Therapeutics and the entire Angelman community, I thank you for your vigorous efforts in creating a better and brighter future for all of our children.