July 7, 2014 — Dr. J. David Sweatt, Professor and Chairman of the Department of Neurobiology at the University of Alabama at Birmingham, has received a research grant from the US National Institute of Mental Health (NIMH) to fund a new project to investigate the molecular and neural basis of Pitt-Hopkins Syndrome (PTHS). The grant, […]
Olivia’s 5k and PTHS Playland was held June 21, 2014 in Lincoln Park, Michigan. This wonderful event raised approximately $6,700. It was a beautiful day filled with great support and love. This was the 5th year of raising awareness of PTHS in Michigan. Some exciting new details were added to this year’s event: a kid […]
On June 21, 2014 the Maginn family held their 5th annual Race for Rylie event, to benefit the Pitt Hopkins Research Foundation. The Race was held at Nockamixon State Park- Marina bike trail, Quakertown, Pennsylvania. Five Pitt Hopkins families joined together that day! A total of $11,570 was raised for research to find a treatment for PTHS. Our […]
I want to sincerely thank all of our amazing sponsors and volunteers for helping with our event in Colorado, a children’s bike/trike ride at the central park in our community The Farm at Arapahoe County. In attendance were approximately 50 kids who treated Henry like a rockstar. In addition to the ride in the […]
Pedal for Pitt Hopkins Million Dollar Bike Ride to End Rare Diseases Philadelphia, Pennsylvania A HUGE THANK YOU to everyone who donated, fundraised, and supported us in raising money for the Million Dollar Bike Ride — WE HAVE SURPASSED OUR GOAL OF $50,000–we have raised $60,000! UPenn has matched up to $50,000, Which means […]
The Burlington Times News by Chelsy Stark May 1, 2014 Liz Jennings was diagnosed with Pitt Hopkins syndrome three years ago. Ever since, she’s been defying what medical journals say she can and cannot do. Pitt Hopkins Syndrome is a rare disease; fewer than 300 people have been diagnosed with it in the world. It’s […]
Pauca family finds positives in fight against rare disease Brant Wilkerson-New/Winston-Salem Journal Posted: Tuesday, April 8, 2014 9:00 pm There will be a 5-kilometer road race Saturday at Tanglewood Park to benefit a charity unlike any other in the nation. The Race For Victor and Pitt-Hopkins Syndrome will benefit the Pitt-Hopkins Research Foundation […]
Pitt Hopkins syndrome is rare but local families fight to raise awareness By Diana Sholley, Inland Valley Daily Bulletin POSTED: 04/14/14, 9:47 AM PDT Stacy Stabile stood in her doctor’s office and held her breath until her lips turned blue. The 10-year-old wasn’t goofing off, nor was she throwing a temper tantrum. Stacy has Pitt Hopkins […]
100 smiling faces of children and adults with Pitt Hopkins syndrome are celebrated in this video, created for Rare Disease Day, February 28, 2014. The voices of siblings describe what Pitt Hopkins means to them, with the precious thoughts of a child. Thank you, Kasi Thursby, for this incredible video of our children. Hope is […]
The main objective of Rare Disease Day was to raise awareness internationally among the general public and decision makers about rare diseases/syndromes and their impact on people’s lives. This years’s theme was Care and the slogan was “Joining together for Better Care”. Caring for people living with a rare disease has many facets. Some patients […]
