The Pitt Hopkins Research Foundation is served by two boards; The Board of Directors and the Scientific Advisory Board. Together, we are working hard to promote awareness of Pitt Hopkins Syndrome and bring practical treatment into current medical practice as quickly as possible.
The Pitt Hopkins Syndrome Fund was established in May of 2010 under the Winston-Salem Foundation in North Carolina, by the Pauca family. That summer armed with a great deal of hope and determination, three families in the US, the Serfass-Maginn family, the McCarthy family, and the Pauca family held simultaneous 5K races in different parts of the country in June 2010 –the first fundraising events for the PTHS fund. In the Spring of 2012, the Davidow-Lapidus family joined the effort and have since been intensely involved in extraordinary fundraising for research into finding a cure for PTHS. In the Fall of 2012, the Norrell-Lenzen family became significant fundraisers. Several other PTHS families have held fundraisers for research. Thank you to all who have fundraised and donated, and who will fundraise and donate in the future.
The Pitt Hopkins Syndrome Fund will become its own non-profit organization with 501(c)3 status in the future, under the name Pitt Hopkins Research Foundation. The law practice of Kilpatrick and Townsend in Winston-Salem, North Carolina, attorney Will Joyner, graciously filed this paperwork pro bono for our Foundation. We are deeply grateful for this very generous gift to all children with PTHS worldwide.