As most of you know, our son, Finn was diagnosed with Angelman Syndrome when he was 18 months old. Reading about AS online we learned that Finn would never talk, might not walk, would have balance and motor impairments, learning challenges and potentially debilitating seizures, among other things. Receiving such a diagnosis was completely devastating.
Finn is turning 10 this July, and one thing we have learned along this journey is that you never know what to expect. The road has been filled with some amazing highs. Finn not only learned to walk, but he can run (something the doctors said would never happen). Watching Finn learn how to express himself, develop friendships, and be constantly both excited and challenged by life has been incredible. Finn's social nature has positively impacted my life by forcing me to talk to strangers and see and hear their stories (although his boundless energy has also caused me to leave many of those conversations mid-sentence!)
On the flip side, Finn has suffered from seizures, 3 ambulance rides to the ER, an extended ICU stay, and many doctor and hospital visits. We made it through a broken leg (and Finn again showed us what a superstar he is learning to navigate his wheelchair so quickly and easily). Yet, time and again, one of the most helpless feelings in the world is knowing something is bothering your child and he can't tell you what it is.
Through all of this the Foundation of Angelman Syndrome Therapeutics (FAST) has been a great resource. From providing information packed seminars about learning and communication for individuals with AS, to hosting an annual gala where we get to connect with the community, to their dedication to cutting edge research, FAST has continuously provided hope and support.
The progress in research and science has been amazing. Science tends to move slow but in the decade that Finn has been on this Earth, the advancements in AS research are mind-boggling. Treatments are not only possible, they are probable. Go ahead and read that sentence again, Angelman Syndrome is a genetic disorder that very likely will have therapeutic treatments available in the future!
Despite the huge impacts that AS has on the individual, scientifically speaking, it is a simple disorder involving only one gene. FAST scientists have already cured AS in the lab using several different approaches. FAST is committed to bringing life-changing treatments for Angelman syndrome to clinical trial – but we need your help. We are at the point where the science is racing ahead and it's the funding that's slowing us down. Due to it's genetic characteristics, Angelman Syndrome is the perfect test case for many of the new scientific technologies being developed. Not only could this research be life-changing for people with Angelman syndrome but, potentially, related disorders like autism and Alzheimer’s disease as well.
FAST has set a $2 million community goal for this year. If we can meet this $2 million goal, we have an excellent chance of getting those funds matched -- and the faster we will be able to start clinical trials. Every dollar counts!
Thank you for your continued support in our journey, and if you want to learn more about Angelman Syndrome, FAST or the promising research, please let us know.