Foundation for Prader-Willi Blog

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 p...

January 2, 2020 Read More

Topics: Research

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 don...

December 4, 2019 Read More

Topics: Research

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 inclu...

November 25, 2019 Read More

Topics: Research

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 ...

November 20, 2019 Read More

Topics: Research

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 g...

November 19, 2019 Read More

Topics: Research

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

In this 51-minute presentation, Dr. Katy Chambers helped participants 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 wi...

November 18, 2019 Read More

Topics: Research

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 Atki...

November 17, 2019 Read More

Topics: Research

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, c...

November 15, 2019 Read More

Topics: Research

Genetic Therapy and PWS — Researcher Fireside Chat [2019 CONFERENCE VIDEO]

Gene therapies for PWS have the potential to provide transformative treatments but much is still unknown in regards to the feasibility of a successful treatment. In this 53-minute video, Drs. Stormy Chamberlain and Jim Resnick give a brief overview o...

November 14, 2019 Read More

Topics: Research

Foundation for Prader-Willi Blog | Research (17)

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IMPACT 2019

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

Interview with the FPWR Research Team [2019 CONFERENCE VIDEO]

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

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

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

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

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

Genetic Therapy and PWS — Researcher Fireside Chat [2019 CONFERENCE VIDEO]

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