Orion's 2017 Cure Angelman Now fundraiser was a huge success thanks to the generosity of many family and friends who believe in him. THANK YOU again.
With five gene therapy strategies in development, FAST-funded scientists are working hard to cure Angelman syndrome. Orion can't wait!
This past year we have learned a lot about how best to help Orion be the most capable Orion possible. He continues to work hard and he has made great improvements. Thanks to neurofeedback and the Low Glycemic Index Treatment diet Orion no longer takes a daily seizure medicine! He has discovered the power of using his AAC (augmentative alternative communication) device to communicate! He is learning to run! He is mostly potty trained! He loves school! He loves wrestle time with daddy and his brothers!
Even with these encouraging strides Orion continues to have challenges in expressive communication and is unable to use his voice to talk. He battles seizures when he is sick or eats food that is not part of his diet. Balance and coordination are daily challenges. The gap between Orion and his typically developing peers continues to widen as he falls farther behind in reaching developmental milestones.
I want to see Orion cured. We are so close! I want to see him be the absolute best Orion he can be. I know you want that for him too. Please partner with me, with Orion, in making his future bright. Because together we can Cure Angelman Now!