Summary of our 2016 Pitt Hopkins Research Foundation

Scientific Symposium & Family Conference


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 how to do this, you can find it here. Or contact Coriell at













Science talks in the a.m. (Abstract link above)

Speaker Nick Martin — The afternoon session was hosted by Nick Martin, who spoke on strengthening relationships when children have special needs, with mom and dad breakout sessions focusing on common challenges Pitt Hopkins parents face.  Nick was nice enough to share these resources with the group:

Handouts —

Website with video of presentations (see left side menu) —

Sibling session — Francesca Pauca led the sibling breakout group and a great time was had by all!








3rd Annual Texas Trekkers Walk An incredible turnout at the Texas Trekkers Walk! HUGE THANK YOU to board member Traci Green and her family for all their hard work putting on an amazing event that raised nearly $9,000 for research!!








AAC in Dallas — Speakers Lucas Steuber and Keisha  and Rylee Tipton challenged everything we thought we knew about our kids. Their heartfelt presentations reminded us that our kids hear and understand everything.. that they are in there, and it’s our job to help them out with Alternative Communication.  Many parents left the conference saying, “They saw their kid in a whole new light — alight of what’s possible, rather than what’s not. Mission accomplished.”










The presentation video, powerpoint slides, handouts for educators, primary research articles, and more can be found on Lucas’ website  (For confidentiality purposes, there is a password on this information – please email for details on how to access it).

Low-tech presentation by Keisha Tipton  —

Dinner at Rafa’s — HUGE Thank you to Pitt Hopkins grandparents Raphael and Kathy Carreon, owners of Rafa’s restaurant. Delicious food, wonderful company and a truly incredible fundraiser, raising nearly 32K for research!! Thank you for your continued support!!








This video sums up the whole weekend… amazing, emotional, fun, laughter, tears, joy, hope…

*30+ individuals with Pitt Hopkins shared their love with each other
*200+ people came together to learn about this rare syndrome
*An infinite amount of laughter
*A few tears (just a few, right guys?!)

The 2nd Pitt Hopkins Family Conference is in the books! Thank you to everyone who made it happen… the families for traveling from all over the world to be together, the speakers and scientists for sharing your knowledge with us, and all the people working behind the scenes to pull it together! What an incredible and unforgettable weekend!!