• About Us

The Foundation

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.

Our Mission

The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and an eventual cure for Pitt Hopkins Syndrome and other similar disorders. The PHRF is also dedicated to supporting the Pitt Hopkins community with resource recommendations, parental support and the latest medical information.

Our History

In 2008, the first few families that had received a diagnosis of Pitt Hopkins Syndrome (PTHS) joined together on the Internet. As the gene that causes Pitt Hopkins was not found until 2007, no association or organization for the syndrome existed. In May of 2010, the Pauca family established a fund under the Winston-Salem Foundation to begin raising money for research into PTHS.

In the Spring of 2012, the Davidow-Lapidus family joined the Pitt Hopkins community, exponentially increasing fundraising efforts to find a cure for PTHS. Many other families also fundraise significant amounts and several serve on the board of the foundation.

In 2012, the Pitt Hopkins Syndrome Fund was incorporated in North Carolina, and was named the Pitt Hopkins Research Foundation (PHRF). In the summer of 2013, the PHRF became its own non-profit organization with 501(c)3 status. Together, we are dedicated to improving the lives of individuals with Pitt Hopkins and one day finding a cure for the syndrome that has affected our families. But we don’t just hope for miracles, we fight for them.

OVER 94% OF ALL FUNDS DONATED GO TO RESEARCH

Our board and officers are parents and professionals who work diligently to ensure over 94% of all funds donated go toward research and our mission of finding a cure.

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