We are pleased to recognize Marco's Pizzeria, 2102 South Eagle Road in Newtown for its assistance
helping the Club's fundraising efforts benefiting the Drew's Hope Research Foundation … the principal beneficiary of our 2018 Charity Golf Outing.
Drew’s Hope Research Foundation, a 501(c)(3) entity, established by Katie and Tony Ferrandino in memory of their son Drew
who died at age 12 of CLN2 Batten Disease, a rare genetic-based neurologic disease of childhood. The Foundation’s funds support research into treatments and cures for, and to create greater awareness of Batten Disease. Children like Drew who contract this form of Batten Disease have seizures and some language loss starting at age 2 ½ to 3 years. Without treatment, they will lose the ability to walk, talk, see or live a full life.
Because of Drew’s Hope and other patient groups, there is now hope in a new treatment approved last year that appears to halt the disease in some children. However, for those families with children afflicted with this horrible disease, there can be no let-up until there is a proven cure.