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Research Blog

PWS Clinical Trials Alert: January 2020

We have exciting news to share! Soleno therapeutics has successfully enrolled 100 patients into their Phase 3 clinical study of DCCR. This is our second clinical trial which has completed enrollment in the past 2 months!

Several additional studies are still enrolling patients. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities...

More reasons than ever to be optimistic of a new FDA approved treatment for PWS

 

We have more reasons than ever to be optimistic of a new FDA approved treatment for PWS in 2020.

Just last week we learned of successful enrollment for the second ongoing pivotal PWS clinical trial (Soleno’s Destiny PWS study), which comes on the heels of Millendo’s Zephyr study reaching its enrollment goal (although its still recruiting PWS children age 4-7)...

Fundraising for PWS — Panel [2019 CONFERENCE VIDEO]

In this 45-minute video, Sarah Peden, Director of One Small Step and FPWR's Community Development Director highlights the success of the PWS community in raising funds for PWS research. Sarah and parents of children with PWS share how they've gotten involved in supporting PWS research, generating hope for themselves and others. Click below to watch the video, or scroll down to read a transcript of the session.

Soleno Therapeutics Completes Target Enrollment in Ongoing DESTINY PWS Phase III Trial of DCCR in Prader Willi Syndrome

Soleno Therapeutics has announced that it has completed their target enrollment for their ongoing Phase 3 trial of DCCR for the treatment of PWS. Approximately 100 people with PWS have enrolled in the study. Enrollment of patients was from 27 sites in the U.S. and the UK.  No serious, unexpected adverse events related to DCCR have occurred in DESTINY PWS to date.

IMPACT 2019

In 2019, more than 11,000 donors supported PWS research and our mission to eliminate the challenges of PWS. We would like to thank all of our supporters: everything we do is made possible by you!

Here are just a few of our accomplishments from this past year.

Self-Care for PWS Caregivers — Elisabeth Dykens [2019 CONFERENCE VIDEO]

In this 41-minute video, Dr. Elisabeth Dykens presents on the results of stress and the importance of self-care when parenting a child with special needs. Dr. Dykens is Professor of Psychology and Human Development at Vanderbilt Unversity and has done extensive research to understand PWS behaviors and develop strategies to improve mental well-being for the entire family dealing with PWS. She spearheaded the PWS Profile and Hyperphagia questionnaires...

FPWR Receives award from the Moriah Foundation to support the development of a Mental Health Guidebook for Prader-Willi Syndrome

The Foundation for Prader-Willi Research is excited to announce the receipt of a financial award from the Moriah Foundation which will be used to support the development of a Mental Health Guidebook for Prader-Willi Syndrome (PWS). Mental health and behavior challenges affect a large percentage of individuals with PWS and their families. These challenges are often under-appreciated and yet the impact on families and individuals with PWS can be profound. 

Interview with the FPWR Research Team [2019 CONFERENCE VIDEO]

In this 57- minute video, FPWR Executive Director Susan Hedstrom moderates as the FPWR research team provides an update on PWS research, achievements to date, and what we are doing to develop treatments for our loved ones with PWS. This session includes Q and A with conference attendees. Panelists include research team members Theresa Strong, Nathalie Kayadjanian, and Lauren Schwartz Roth and FPWR CEO John Walter...

Gillian Segall Inspires PWS Community With Message of Hope [2019 CONFERENCE VIDEO]

Gillian Segall is an 18-year-old high school senior from Chicago, who loves to swim and take care of animals and also happens to have PWS. In this inspiring 15-minute interview, Gillian kicks off the 2019 FPWR Family Conference in New Orleans. Click below to watch the video, and scroll down for a full transcript.

What's Happening in PWS Research? [2019 CONFERENCE VIDEO]

In this 50-minute video, Theresa Strong and other FPWR research team members sum up the presentations given at the 2019 PWS Research Symposium. This overview provides a great synopsis of PWS research developments and work in progress, including PWS genetic therapy research, caring for people with PWS, managing clinical complications, newborn screening, drug development, pretend play, the PWS weight study, the Global PWS Registry, and clinical trials. Click below to watch the video...