Foundation for Prader-Willi Blog | News

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.  

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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 community rising together to raise critical funds for PWS research while doing what they love!

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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 strategies is important for long term health.

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Multidisciplinary PWS Doctor Duis To Share Treatment Expertise at 2019 Conference

Are you excited about the upcoming FPWR conference this October in New Orleans? We are! And here is just one more reason this year’s conference should not be missed: Dr. Jessica Duis.

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Dr. Theresa Strong Joins Scientific Advisory Board of Saniona

 

FPWR works closely with several clinical trial sponsors in order to help companies understand the medical needs and challenges of PWS, provide input into study protocols and educate the community about trial opportunities. Most recently, FPWR Director of Research Programs, Dr. Theresa Strong, was invited to participate on the Scientific Advisory Board for Saniona, a therapeutic company working on a new treatment for hyperphagia in PWS.  Saniona will leverage the expertise of its Scientific Advisory Board as it develops its Phase 2b and 3 studies of Tesomet which are planned to take place in both the U.S. and Europe over the next 2 years.  Read below for their recent press release.

 

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May is #PWSAwareness Month | We Have Your PWS Awareness Resources

Visit our PWS Awareness month page on the FPWR website for inspiration, educational resources and fundraising ideas to help you with your awareness activities! And don't forget to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

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PWS Clinical Trials Consortium Meets with FDA for a Critical Path Innovation Meeting

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in PWS, it is a critical time for the FDA and industry partners to fully understand the unmet medical needs and the impact that PWS has on those with the disorder and their families.

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Latest PWS Research To Be Presented At 2019 Conference

We cannot wait for this year’s FPWR family conference, and what would an FPWR conference be without research!

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Getting the Right IEP for Your Student With PWS: Lessons from a Principal

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?

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From the CEO's Desk: Working Together to Grow Our PWS Research Investment

Our team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!

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