Foundation for Prader-Willi Blog | News

FPWR and Zafgen Partner for Natural History Study 'PATH for PWS'

FPWR and Zafgen have partnered to execute a four-year study that will advance the understanding of natural history and medical events in people with Prader-Willi syndrome.

The PATH for PWS study (Paving the way for Advances in Treatments & Health for PWS) is a non-interventional, observational study of serious medical events in PWS, intended to inform development and clinical trial design for potential new treatments for PWS.

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Interactive PWS Clinical Trial Finder Now Available!

In our continued commitment to provide information on PWS clinical trials, FPWR is pleased to share our new Interactive PWS Clinical Trial Finder. The latest addition to our clinical trials information page, this interactive map allows caregivers to quickly find trial sites based on location and learn more about sites that are of interest to them.

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FPWR Conference Spotlight: Improving Clarity of Speech in PWS

We’re counting down the days to this year’s FPWR Family Conference in October, and I know we’ll all get something out of Kolby Kail’s session on Improving Clarity of Speech in PWS.

Kolby Kail is licensed in California as a speech-language pathologist. She has more than 15 years of experience treating children with speech difficulties. 

Her session will give parents and caregivers practical solutions, including questions to ask when they’re interviewing a speech-language pathologist, as well as activities and exercises we can do with our children at home.

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FPWR Conference Spotlight: Optimal Nutrition in Prader-Willi Syndrome

We’re all looking forward to this year’s FPWR Family Conference, and one of the informative sessions I hope you’ll join me at is Melanie Silverman’s Optimal Nutrition in Prader-Willi Syndrome.

Melanie is a pediatric registered dietitian and board certified lactation consultant. She’s worked with patients who have PWS for more than 10 years, and she’s gained a wealth of knowledge about what a healthy diet looks like and how dietary recommendations have changed over time. Melanie is also the Chief Clinical Officer for Pacify, a tele-health mobile application.

As every parent and caregiver knows, feeding kids with PWS is one of the biggest challenges we face and one of the most emotional. As Melanie notes in her session description for Optional Nutrition in Prader-Willi Syndrome, “Nutrition is complicated, and the internet isn’t helpful.” She’s here to give all of us a better understanding of what and how to feed our loved ones, both adults and children.

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New PWS Explainer Video Describes Prader-Willi Syndrome In 3 Minutes

In just 3 minutes, FPWR's new video, What Is Prader-Willi Syndrome?, explains the basics of PWS — how it occurs, some of the challenges of PWS, and promising research into treatments. Narrated by Susan Hedstrom, Executive Director of FPWR and the parent of a child with PWS, it features many photos of people with PWS and their families — and it ends with a message of hope. 

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Spring Cleaning? Put Your Efforts Towards Supporting PWS Research!

Looking for a quick FUNdraiser this spring? Grab a few friends and de-clutter for donations! Here's how to host a spring cleaning fundraiser for PWS research in 4 easy steps:

1. Ask supporters to donate items to your “garage sale” that they’d ordinarily give away or sell. Set up a virtual fundraising page with all the details of your sale and ways people can get involved. Here are some tips for getting your community, friends, and family involved:

  • Offer to pick up donated goods, or set a designated time for drop-off at your home
  • Ask friends to volunteer to help you set up the night before your sale and / or help on the day of the sale

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Phase 2 Study on Oxytocin for PWS Now Recruiting

A Phase 2 Study of intranasal oxytocin (IN-OXT) is now recruiting patients for an 8-week double blind study to evaluate the safety and efficacy in pediatric patients with Prader-Willi syndrome. Data from the study will add to the current knowledge that intranasal oxytocin is an effective treatment for hyperphagia as well as other symptoms of PWS.

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Phase 2 Study Announced: Tesomet for PWS Weight Loss, Hyperphagia

Saniona has announced it will continue its phase 2 study of Tesomet for Prader-Willi syndrome. Saniona is developing Tesomet as a potential treatment for PWS patients to help with weight-loss and reduce hyperphagia (excessive hunger). The study, which had been divided into two parts, was paused while data from the first half of the study was analyzed.

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Cannabidiol (BCD) Oral Solution for PWS: Phase 2 Clinical Trial Begins

INSYS Therapeutics recently initiated a Phase 2 clinical trial of its cannabidiol (CBD) oral solution for evaluation of safety and efficacy in pediatric patients with Prader-Willi syndrome.

The INSYS study will measure the effect of the company’s propriety CBD oral solution on behavior related to hyperphagia. The study is enrolling 66 patients ages 8 – 17 years old at 10 clinical sites in the United States, with results expected in the fourth quarter of 2019. The first trial site is now open. Click here for more details

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May is #PWSAwareness Month | We Have Your 2018 Awareness Resources

Visit our 2018 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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