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FPWR Blog

Pitolisant approved for treatment of excessive daytime sleepiness in adult patients with narcolepsy

Harmony Biosciences has announced that the U.S. Food and Drug Administration has approved WAKIX® (pitolisant) for the treatment of excessive daytime sleepiness (EDS) in adult patients with narcolepsy.

Topics: News

Our Challenges Are Opportunities To Be Better People, Says PWS Mom

A special contribution by guest blogger Laura Achlabach Laura shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Topics: Research

'My Life Was Enriched By Having a Sibling With PWS'

A special contribution by guest blogger Deb Cooper Deb shared her story via our Stories of Hope questionnaire.

Topics: Stories of Hope

Anyone Anywhere Can Raise Funds to Speed Research for Prader-Willi Syndrome

Community members from coast to coast are finding easy ways to make supporting PWS research FUN! A 1-mile kids race, a friendly kickball tournament, an uncle's bike ride across America, and an individual Ironman are just four examples of our communit...

Topics: News

Uncle Paul Cycles America to Build Awareness of PWS

Paul Golub’s 30th anniversary working for Walmart in Athens, GA, was just around the corner, when his upper management approached him and asked what he would like to do to celebrate the occasion. After spending some time thinking about it, he remembe...

Topics: Stories of Hope

Why I Believe We Are Entering a Golden Age of Medicine

In 1869, scientists isolated DNA for the first time. In 1953, they identified its double-helix structure. In the late 1970’s bone marrow transplantation was introduced, and entire immune systems (genes) were replaced as means to cure some blood cance...

Topics: Research

PWS Mindfulness and Meditation Trailblazer Singh To Speak at 2019 Conference

The ability to regulate emotions is an essential skill for a happy life, and for many of us this can be challenging to accomplish! When left unmanaged, high levels of stress can lead to both mental and physical ailments which is why learning coping s...

Topics: News

Camaraderie & Joy : Walking in Washington, DC

I recently had the joy of attending the One SMALL Step walk in Washington, D.C. on June 1, 2019. Being that I am involved daily in the One SMALL Step community, often helping in the background with technology, logistics, communications and coaching, ...

Topics: Stories of Hope