Foundation for Prader-Willi Blog | News

FPWR Conference Spotlight: PWS Applied Behavior Analysis

We hope that every parent walks away from the FPWR Family Conference with new information they can use in their everyday lives, and our two sessions on PWS Applied Behavior Analysis (ABA) will be packed with practical tools.

Board Certified Behavior Analyst Cindy Szapacs and Associate Behavior Analyst Tony Chambers will lead separate sessions on ABA focused on dispelling myths and education advocacy, respectively.

For all parents who have faced or are facing behavior challenges, these PWS Applied Behavior Analysis sessions should shed light on a better path forward for you and your child.

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Finally! We have treatments for PWS in clinical trials. How have we gotten here?

We are in an exciting time in PWS research. More clinical trials evaluating new drugs for PWS are taking place this year than in the last 10 years combined! For the first time ever, families will be able to choose from multiple clinical trials enrolling patients across the United States. More than 500 patients will be needed to fill these clinical trials.

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FPWR Conference Spotlight: Schaaf-Yang Syndrome Workshops

For the second year in a row, we’re looking forward to holding Schaaf-Yang Syndrome Workshops at the FPWR Family Conference. Please join me in welcoming SYS families again this year!

In 2017, families with a diagnosis of Schaaf-Yang syndrome (SYS) gathered with us to share research information and insights. Schaaf-Yang syndrome is a genetic disorder that’s caused by a disruption of the MAGEL2 gene on chromosome 15. The same disrupted gene is also missing in PWS, which occurs when MAGEL2 and several additional genes on chromosome 15 are missing or inactivated.

Conference sessions marked “SYS Families” are either specific to SYS or will contain PWS information that’s also relevant.

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Theresa Strong Named to FDA Patient Engagement Collaborative

FPWR is thrilled to announce that Theresa Strong, our Director of Research Programs (and mom to Daniel, with PWS) has been selected to serve on the Patient Engagement Collaborative (PEC) by the U.S. Food and Drug Administration and the Clinical Trials Transformation InitiativeThe collaborative will share ideas on innovative ways for patients and the FDA to work together in the regulatory decision-making process.

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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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