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Research Blog

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...

Levo Therapeutics Receives Fast Track Designation From FDA for Intranasal Carbetocin for the Treatment of Prader-Willi Syndrome

Levo Therapeutics has received a Fast Track designation from the FDA for intranasal carbetocin for the treatment of PWS. A Fast Track designation will expedite the review of carbetocin so that, if shown to be effective, the product will get to market faster. This is very important for PWS as currently there are no treatments for many of the most challenging symptoms of PWS, such as hyperphagia.

IEPs and PWS — Advocating for Your Child [2019 CONFERENCE VIDEO]

In this 51-minute video, Dr. Katy Chambers helps understand the IEP (Individualized Education Plan) process and succeed in the IEP journey. Katy Chambers is a school principal of nine years and mom to Daniel (age 7), who lives with PWS...

How a Modified Atkins Diet for PWS Changes the Microbiome [2019 CONFERENCE VIDEO]

Have you ever wondered what is the optimal diet for a person with PWS? We may not be able to answer that question just yet, but in this 29-minute video, Dr. Anne Scheimann from Johns Hopkins shares preliminary data from her study on the Modified Atkins Diet (MAD) for PWS and on important changes it may have in the microbiome. They review diet strategies for PWS, go over the specifics of the MAD study, and share results related to weight changes and the microbiome...

Standards of Care for Adults and Children With PWS [2019 CONFERENCE VIDEO]

Whether you are new to PWS or a veteran, its important to stay current on standards of care. In this 57-minute video, Dr. Jessica Duis describes standards of care for both children and adults with PWS, covering topics such as supplements, oxytocin, constipation and gastroparesis, hormone replacement and growth hormone therapy. Click below to watch the video...

November 15th Is International 15q Day

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes.