Darling Quinn Doty is one of approximately 700 individuals worldwide to have been diagnosed with Pitt Hopkins Syndrome (PTHS), a rare neurodevelopmental disorder for which no pharmaceutical treatments are yet available. Enter the Pitt Hopkins Research Foundation (PHRF), which urges, “Don’t just hope for MIRACLES, FIGHT for THEM!” And boy do they walk the walk.
Photographs are care of Allison DotyQuinn’s mother Allison and the rest of her family became staunch advocates of the PHRF after Quinn was diagnosed with PTHS, even hosting their own fundraiser last year that raised $8,000 of the more than $500,000 donated to PHRF in 2017. “The foundation and the families associated with it have become a lifeline for us,” says Allison. Since its inception in 2012, the PHRF has granted more than $2 million to scientists conducting PTHS research, in addition to providing support, information, and loving friendships to families of those with PTHS
A “Mind Map” of the PHRF’s “Road to Treatment” outlines and details precisely how much money is being granted to which researchers and the specific research they are doing, so donors can see clearly the difference their donations are making. The groundbreaking scientists whose work the PHRF funds get to know children with PTHS and their families, too, humanizing the work. Allison says, “Our families have met these researchers at our annual conferences. We know their names and faces and they have seen the faces of our precious children they’re working for. It’s a beautiful partnership.”
All members of the PHRF’s board of directors, officers, and advisory board members are parents and professionals who work passionately without compensation. These superheroes are dedicated to accelerating progress towards developing effective treatments and ultimately a cure, and their dedication is truly making magic happen. If the results of the past six years’ of PHRF-funded research are anything to go by, very soon, Quinn and her friends with PTHS may have access to treatment or even a cure! If you want to accelerate scientists’ progress in making this miracle happen, use code GIVE364 at checkout today and 10% of your purchase price will go straight to the PHRF. Shop now to earn a donation.