Pitt Hopkins Syndrome Awareness Day T-Shirt Fundraiser

Your tee-shirt dollars will enable families to access medical care at the Pitt Hopkins Clinic at MGHfC. Specialists at the clinic see children and young adults with Pitt Hopkins in a coordinated, multi-specialist visit. The goal of seeing a cohort of individuals with Pitt at a central location is to better characterize the syndrome, as well as to advance symptomatic care and best medical practices for our loved ones. The Family Support Fund will specifically help to cover medical costs for physician visits when claims may be denied through the insurance appeals process. Hotel, gas and food vouchers are additionally available to families in financial need to help defray costs associated with travel to the Boston-based clinic from out of state. With your dollars, we hope that many will be able to make the journey to Boston and the Pitt Hopkins Clinic at MGHfC ahead.

All funds raised will be paid directly to the Family Support Fund for the Pitt Hopkins Clinic at MGHfC. For more information see: https://fundraise.massgeneral.org/nancy-le-gendre

What is Pitt Hopkins?

Pitt Hopkins Syndrome is characterized by moderate to severe developmental delays, low muscle tone and mobility issues, disordered breathing, seizures, severe intellectual disability and common facial features. Although few with Pitt Hopkins develop functional speech, many communicate their needs using a combination of gesture, body language and augmentative communication strategies. With supports and access to quality medical care, our loved ones can live healthy, happy productive lives.