Sponsors

In September 2024, J & B Body Works hosted their second annual charity car show, with an initial goal of raising $20,000 for PWANY in honor of a family member diagnosed with PWS.  

J & B Body Works is a high end collision shop in Mount Vernon, NY. Their charity car shows bring together amazing cars to support worthy causes. They crushed their goal in 2024 and raised over $60,000 for PWANY. In addition to supporting the mission of the Alliance, the family requested that a portion of the proceeds be designated to support research benefitting the PWS community.

PWANY is incredibly grateful for the efforts of the Kelleher family and J & B Body Works!

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Harmony Biosciences is a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases who have unmet medical needs. Driven by novel science, visionary thinking, and a commitment to those who feel overlooked, Harmony Biosciences is nurturing a future full of therapeutic possibilities that may enable patients with rare neurological diseases to truly thrive. 

Harmony Biosciences is conducting a clinical study called TEMPO. This clinical study is assessing an investigational medication, pitolisant, for excessive daytime sleepiness in people 6 years of age or older with PWS and is seeking volunteers. TEMPO has trial sites around the United States and a fully-at-home option.

A person may qualify to participate in the TEMPO study if they:

• Are 6 years of age or older

• Have a diagnosis of PWS

• Have excessive daytime sleepiness

This is not a complete list of study requirements. The study doctor will review all the requirements with you. For more information on the TEMPO study, please visit the study website here.