Connor Wolfe, a junior at Greenwich Country Day School, was inspired by a 9 year old girl in his local community named Alya who suffers from PACS1 disease, a rare neurogenetic disorder. Alya has daily struggles which include seizures, speech difficulties and developmental delays. After researching PACS1, and learning all about the challenges Alya faces, Connor dedicated his Henrik Lundqvist Foundation Independent Service Project (ISP) to raise awareness and funds for PACS1.
Due to a gene mutation, PACS1 children are severely impaired both mentally and physically. Sadly, there is 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.
Connor started an online fundraising campaign and shared it with his community. He successfully raised over $1,300 which will go directly to helping find a cure for these children. Next, Connor organized a PACS1 Lifting Event through his Powerlifting Club at Greenwich Country Day School as a creative way to help raise awareness for this rare disease. Students came to the gym during school to show their support by lifting, cheering on fellow students and donating money. It was a fun way to engage students and also spread an important message about rare diseases.
“Connor’s efforts are not only raising awareness but also crucial funds needed for PACS1 research. When you support Connor’s fundraiser, you’re not just cheering on an exceptional HLFYA; you’re becoming a part of our mission to find a cure for children affected with this debilitating disease.” – says Taruna Reddy, President of the PACS1 Foundation