Our daughter, Rylie, has been living with Pitt Hopkins Syndrome for fourteen 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. Fourteen 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 having an optimistic mindset that Rylie’s future will be better than her current reality. Unfortunately, hope comes at a cost. This page has been set up to accept donations for Pitt Hopkins research. Your donation gives Rylie, and all of her friends living with Pitt Hopkins Syndrome, the hope they need to fight another day.