Igniting Hope: Raising Awareness and Funds for Rare Diseases

I am Connor Wolfe, a junior at Greenwich Country Day School and a Young Ambassador for the Henrik Lundqvist Foundation.

I was inspired by a little girl in my community named Alya who has PACS1 disease. She's 9 years old and suffers daily with seizures, speech difficulties and developmental delays. After researching PACS1 disease and learning about all the challenges Alya faces, I am dedicating my independent service project to help raise awareness and funds for this rare neurogenetic disorder.

Due to a gene mutation, PACS1 children are severely impaired both mentally and physically. Sadly, there is currently no cure to help these children. But there is hope! The PACS1 Syndrome Research Foundation is making huge strides towards finding treatments. Scientists are close to a breakthrough that will drastically improve these children's lives. The hope is that one day soon these children will no longer have seizures, they will be able to speak with words and they will be able to run, jump and play with their peers.

Please show your support for PACS1 research– every little bit helps. With your help, we can change these children's lives for the better.