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FPWR Blog

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Ghrelin drug shows no impact on hyperphagia in PWS in a clinical trial

Ghrelin is a small hormone produced in the stomach that stimulates increased appetite. Although it mediates other important effects, such as growth hormone release and a better ability to cope with stress, its direct impact on appetite led to it bein...
April 25, 2022 Read More

Topics: Research

Schaaf-Yang Syndrome Heroes Say, 'You Can do Hard Things!'

A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...
April 19, 2022 Read More

Topics: Stories of Hope, SYS

DCCR Clinical Trial Update [2021 CONFERENCE VIDEO]

In this one hour and 3‑minute video, several investigators discuss a Phase 3 Clinical Trial of DCCR, a controlled release tablet of diazoxide choline, run by Soleno Therapeutics. The session includes Q&A from participants in the 2021 FPWR Virtual...
April 18, 2022 Read More

Topics: Research

Partnering for a Successful IEP [2021 CONFERENCE VIDEO]

In this 1 hour and 12‑minute video, Dr. Katy Chambers, former high school principal, teacher, and mom to Daniel who lives with PWS, shares her journey maneuvering the special educational system from both sides of the table. The session includes Q&...
April 1, 2022 Read More

Topics: Research

Early Investments Lead to 3 New Potential Drug Treatments for PWS

To ensure that new treatments for PWS are advanced as quickly as possible, FPWR collaborates with academic researchers, pharma companies, and other stakeholders to speed the drug development timeline and get treatments into the hands of patients fast...
March 23, 2022 Read More

Topics: Research

PWS Registry Data: Scoliosis in PWS [INFOGRAPHIC]

Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and or surgery for spinal issues. Here, we...
March 21, 2022 Read More

Topics: Research

Highlights from the PWS Research Symposium [2021 CONFERENCE VIDEO]

In this 1 hour and 2‑minute video, Dr. Theresa Strong, FWPR’s director of research programs, shares highlights from the 2021 PWS Research Symposium. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
March 15, 2022 Read More

Topics: Research

Help us Learn More About the Use of Feeding Tubes in Infants with PWS

Researchers from the PWS CLIC (Clinical Investigation Collaborative) need your help to learn more about the use of feeding tubes in infants with PWS.
March 10, 2022 Read More

Topics: Research

FPWR Launches 3 New Research Programs to Advance PWS Drug Development

With the support of the John C. Storr and Suzanne M. Storr Foundations, FPWR is excited to announce the launch of three new research programs designed to translate findings from the lab to human clinical trials, accelerating the development of new tr...
March 8, 2022 Read More

Topics: Research

About FPWR

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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