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FPWR Blog

Scoliosis In PWS Covered In New Publication

Parents may want to download and keep a copy of a newly available review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and scoliosis, ...

Topics: Research

Study Supports Eye Tracking to Measure Hyperphagia in PWS

Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritiona...

Topics: Research

Evidence For Accelerated Aging In Young Adults with PWS

Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area that is in need of f...

Topics: Research

PWS Registry Data: Dermatology [INFOGRAPHIC]

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin, and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS. Da...

Topics: Research

Top-line Results Announced for Phase 3 Trial Evaluating DCCR for PWS

Soleno Therapeutics has announced top-line results from the company’s phase 3 trial, DESTINY PWS (C601), evaluating once-daily diazoxide choline controlled release (DCCR) tablets for patients with Prader-Willi syndrome (PWS). The results of the study...

Topics: Research

Once She Sets Her Mind to Something, Nothing Can Stop Her!

A special contribution by guest blogger Alice Shapley Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the rol...

Topics: Stories of Hope

FPWR Announces First Round of 2020 Grant Awards for PWS Research

  The Foundation for Prader-Willi Research announces our first round of Research Awards in 2020 totaling $912,251. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ...

Topics: Research

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...

Topics: Research

May is #PWSAwareness Month | We Have Your PWS Awareness Resources

On May 1 we are kicking off Prader-Willi Syndrome Awareness Month! Since 2010, PWS Awareness month has mobilized the PWS community to raise awareness and educate others in their communities and across the country.  Visit our PWS Awareness month page ...

Topics: News

Bringing Joy During COVID-19 With Interactive Activities

With COVID-19 keeping many of us indoors and isolated from our friends and family, we are all seeking new ways to stay connected and spice up our days! A few innovative community members have shared fun activities they have found that allow them to c...

Topics: News