Our daughter, Rylie, has been living with Pitt Hopkins Syndrome for fifteen years now. When I think about what this disease has taken from her…

• the capability to communicate her wants, needs, and feelings, to her loved ones
• the ability to walk over and join a group of her peers and feel included
• privacy when her personal care needs are being met
• a life free of pain and discomfort

…the grief is overwhelming. Fifteen years is too long a time to live without these basic human dignities.

But there is one part of the human experience that Pitt Hopkins can never take.

HOPE!

Hope means believing that Rylie’s future will be better than her current reality. It hinges upon the belief that the mission of the Pitt Hopkins Research Foundation will, one day soon, be a reality. And because finding a cure for this debilitating disease comes at a cost, this page has been set up to accept donations in an effort to advance that mission. 

Thank you for giving us the hope we need to keep fighting another day!