Events

  • The Pitt Hopkins Pedalers are back! Including $50,000 in matching funds that we were awarded from the UPenn Center for Orphan Disease Research, we ended up with over $100,000 for research from Million Dollar Bike Ride 2016! With those donations, we were able to fund the research of Dr. Marenda at Drexel University, and Dr. […]

  • Summary of our 2016 Pitt Hopkins Research Foundation Scientific Symposium & Family Conference THURSDAY, NOV 3: Scientific Symposium — You can read abstracts from the talks here.   Coriell blood bank draw — We had nearly 20 patients submit blood samples for research at the conference. Thank you!  If you would like more information on […]

  • Rafa’s Cafe raised an astounding $32,000 for research into Pitt Hopkins syndrome, November 5, 2016, during the Dallas Family Conference. Raphael and Kathy Carreon, owners of Rafa’s, are the grandparents of Iris Eyres, who was diagnosed with PTHS last year. Thank you to all the generous friends, family, loyal customers, and Pitt Hopkins families who […]

  • WATCH OUT DALLAS, HERE WE COME! Announcing the 2016 Pitt Hopkins Research Foundation’s Scientific Symposium and Family Conference, November 3-5, 2016. We’ve got big shoes to fill after the DC Conference—but these boots make us think Dallas Texas will measure up just fine! FAMILY REGISTRATION PAGE (Family registration is now closed): http://www.phrfconferencedallas.myevent.com SCIENTISTS REGISTER FOR THE […]

  • Walk Coordinators: Traci Green, Connie McNay, Stephanie Sanborn Congratulations to the Dallas Texas Trekkers coordinators for raising an amazing amount for research: $8658.50! A total of 221 individuals participated in the Walk, showing their dedication and support in finding a cure for Pitt Hopkins.  This event took place during the Dallas PHRF Family Conference, with approximately […]

  • Please help Jamie McFadden bring awareness for Pitt Hopkins Syndrome and raise funds to benefit the Pitt Hopkins Research Foundation.  Donate in honor of Jamie McFadden, at: https://pitthopkins.org/donate/ Event: TOUGH MUDDER 2017, Mont St. Louis Moonstone, Coldwater, ON, Canada, August 19, 2017 jamiemcfaddenphf-postcard

  • The 2016 Second Annual Love for Lakely Golf Invitational raised $21,591 research into Pitt Hopkins, surpassing last year’s tournament proceeds!  This amount exceeded our expectations and goes to show the incredible sense of community we have here in the Huntsville Alabama area. We could not have done it without you! PHRF is now funding five research projects, […]

  • This year’s Walk with Anthony raised $10,000, all to go for research into finding a cure for Pitt Hopkins! Thank you to all who joined us for our walk with Anthony through Chestnut Branch Park, Manuta, New Jersey, for Pitt Hopkins Syndrome Awareness Day.  Our son Anthony was born with this Syndrome and was officially diagnosed […]

  • Sunday, September 18th marks our 4th annual Pitt Hopkins Awareness Day! We have more than 28 countries across the world raising awareness, how incredible! There are many ways to get involved listed below. If you have something planned, we would love to hear about it!   HOW TO GET INVOLVED WITH AWARENESS DAY 2016! 1. […]

  • A total of $7094 was raised from the 2016 Pitt Hopkins Awareness Day T-shirt campaign!  A big thanks to Traci Green and Jessica Fletcher who organized such a fabulous fundraiser!  This campaign ended August 26, 2016.  Stay tuned for more T-shirt + fundraisers soon!

Pitt Hopkins Research Foundation. Don't just hope for MIRACLES, FIGHT for THEM!