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. 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.

Danielle Angiolillo is an adult with Prader-Willi Syndrome.  She enjoys creating artwork in a number of mediums. Her favorite medium is collage. She lives with her mom, dad, and three Westies. Danielle wanted to support the mission of PWANY and chose to support conference by donating funds gifted to her or in her honor.

Thank you so much, Danielle! 

We are a biopharmaceutical company focused on the development and commercialization of novel therapeutics for the treatment of rare diseases, starting with Prader-Willi syndrome (PWS). Headquartered in Redwood City, CA, and founded in 2017, our team is committed to developing therapeutic options to address the most burdensome aspects of PWS.

At Soleno, we believe that every individual living with a rare disease deserves not only better treatment options but also the opportunity to thrive. Our work is driven by the strength of the rare disease community and our commitment to improving lives. To learn more about Soleno Therapeutics, please visit soleno.life.