PITT HOPKINS RESEARCH FOUNDATION
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Mission Statement
The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and hopefully an eventual cure of Pitt Hopkins and other similar disorders. Made up of families for families, the PHRF is also dedicated to supporting PTHS children with resource recommendations, parental support and the latest medical information. Our board and officers are parents and professionals who volunteer their time, so that 94% of all funds raised and donated go to finding a cure. Our goal is to find a treatment as quickly as possible that will help give our children fuller, higher functioning lives.
About This Cause
From the day we started the PHRF in 2012, our foundation has worked tirelessly to reshape the future of Pitt Hopkins syndrome – from funding the most cutting edge labs, to cultivating top scientists and industry partners, to increasing international awareness and education. Our strategic approach makes the PHRF not only the leader in Pitt Hopkins research, but a leader in rare disease research. We are proud and humbled that many fledgling rare disease foundations now come to us for advice on how to get the job done. In the last twelve years we have raised over $4.5 million for groundbreaking research; research the NIH and CIRM deemed promising enough to augment with more than $7 million in matching funds. Beyond helping our children, the NIH and CIRM realizes that Pitt Hopkins research could hold answers for many other neurological diseases, like Alzheimer’s, Autism, Schizophrenia and more. We feel a great responsibility to our donors and our families to make the most of every dollar donated. As president, this weighs heavily on me, and my commitment to you is to make smart, focused decisions where every dollar is maximized, where research does not languish in the lab, but instead gets translated as quickly as possible to potential treatments. Thanks to you, we have so much to be grateful for. However, there is still much to be done. For all the other courageous children and families dealing with this debilitating syndrome, our fight continues. We can’t stop. And we won’t stop.