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Foundation for Prader-Willi Blog | Research (20)

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Practical Tips for Behavior Intervention At Home

COVID-19 has made all of our homes feel a bit smaller these days... Living together 24/7 has surely whittled away at our patience and increased everyone's anxiety. In this webinar, Patrice Carroll, Director of PWS services at Latham Centers, gives ad...
April 30, 2020 Read More

Topics: Research

PWS Registry Data: Vision [Infographic]

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,...
April 15, 2020 Read More

Topics: Research

Advice for Caregivers During COVID-19 [PODCAST]

In our latest podcast, Patrice Carroll, Director of PWS Services at Latham Centers in Cape Cod, shares how to how to help our loved ones with PWS through this unusual time of social distancing and isolation due to COVID-19. To listen, just click abov...
April 6, 2020 Read More

Topics: Research

Tips for Staying Calm and Managing Anxiety During COVID-19 [PODCAST]

In our latest podcast, Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares tips on how to stay calm and manage anxiety during COVID-19. To listen, just click above, or read below for a list of tips to start using tod...
March 23, 2020 Read More

Topics: Research

Top-line Data From DESTINY PWS Study Expected First Half of 2020

Soleno therapeutics recently completed enrollment of their ongoing Phase III Clinical trial, DESTINY PWS, and is expecting to announce top-line data the first half of 2020. The study is evaluating once-daily Diazoxide Choline Controlled-Release (DCCR...
March 5, 2020 Read More

Topics: Research

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants re...
February 25, 2020 Read More

Topics: Research

Study Shows Vagus Nerve Stimulation Could Help Treat Behavior in PWS

Temper outbursts and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family (Tsai 2018). Emerging research suggests that vagus nerve stimulation (VNS) may hold promise as a treatment for ...
February 5, 2020 Read More

Topics: Research

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

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The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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