Category: Blog

Leading PWSA | USA; Our Executive Directors

The leadership in an organization is one of the most important elements to achieving long-lasting success.   It is important for this individual to be passionate, knowledgeable and organized.  They must be a team builder as well as build and maintain alliances.  They must be vigilant in making sure there are the proper resources to maintain...

Living and Thriving with PWS (Part 3)

Living and Thriving with PWS – Love, Faith, and Future Grace By Derek Montecalvo   One day, at the residential home in Barnstable where I was living, there was a commotion outside as staff and residents transitioned a new resident into his room. A beautiful young woman happened upon my doorstep during this transition. The...

Harmony Biosciences Enrolls First Patient in Phase 2 Trial Evaluating Pitolisant For Excessive Daytime Sleepiness in Patients with Prader-Willi Syndrome

PLYMOUTH MEETING, PA and CHICAGO, IL, December 15, 2020 — Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients living with rare neurological disorders who have unmet medical needs, today announced the first patient has been enrolled in a Phase 2 trial evaluating the safety...

Living and Thriving with PWS (Part 1)

Living and Thriving with PWS – The Early Years By Derek Montecalvo   Hi, my name is Derek Montecalvo and I’m a 30-year old young adult with Prader-Willi Syndrome. I was diagnosed when I was very little via bloodwork. My parents are Gregory and Sharon Montecalvo, and I have an older brother named Aaron Montecalvo....

Holidays and Siblings

The holidays, usually filled with excitement and family connection, often mean something completely different for families with a member with Prader-Willi Syndrome (PWS). Exorbitant amounts of food, continual interruptions to the normal schedule, and extended social interactions add stress for the individual with PWS and the entire family. Siblings of individuals with PWS are already...

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