FPWR Blog

FPWR Conference Spotlight: PWS Behavior Experts

For every FPWR Family Conference, we introduce new panels, topics or activities, and this year I’m excited to announce our first-ever panel with three of the world’s most relevant PWS behavior experts.

Moderator Lauren Roth will lead panelists Elizabeth Roof, Kate Anne Woodcock and Anastasia Dimitropoulos in a discussion on what they’ve learned in recent trials on behavior and what is being done to help us all overcome behavior challenges in our loved ones with PWS.

We’re thrilled to bring such a high-caliber group of PWS behavior experts together for the first time, and we’re equally excited about the other sessions they’re involved with throughout the conference.

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.

Topics: News

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.

Topics: News

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.

Topics: News

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.

Topics: News

PWS Clinical Trials Alert | Updated June 2018

Several NEW PWS trial opportunities are now available. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention (non-drug) or natural history studies, like the PWS Weight Study described below. 

FPWR does not endorse or recommend any specific study. Our goal is to provide information to help members of the PWS community decide whether participation in a clinical trial is right for them and their loved one with PWS.  Anyone considering participating in a clinical trial should discuss the matter with his or her physician. 

Topics: Research

Results of Phase 2 Study Evaluating Carbetocin for PWS Published

The results of a Phase 2 clinical trial evaluating carbetocin in PWS have just been published in the journal JCI Insight. The findings of the paper, "Intranasal Carbetocin Reduces Hyperphagia In Individuals With Prader-Willi Syndrome," support the advancement of the drug to a larger and longer Phase 3 evaluation in the PWS population.

Topics: Research

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. 

Topics: News

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

Topics: News

How Patients Can Partner to Speed Treatments for PWS [WEBINAR]

On May 15, PWSA-USA and FPWR jointly presented the webinar How Patients Can Partner to Speed Treatments for PWS. The webinar provided important information about PWS clinical trials including: what to expect when participating in a trial, what questions you should ask, and how to get the information you need to decide if a clinical trial is right for your loved one with PWS. The webinar also gave a brief overview of the trial opportunities that are available in 2018. You can watch the webinar in its entirety or read a summary of the webinar below.

Topics: Admin

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