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FPWR Blog

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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

Carbetocin Clinical Trial Update [2021 CONFERENCE VIDEO]

In this 35‑minute video, Sara Cotter, founder and CEO of Levo Therapeutics, joins other members of the Levo team in describing the company’s mission of developing impactful therapies for the PWS community. The session includes Q&A from participan...
March 4, 2022 Read More

Topics: Research

Changes Announced to Make Participation in Pitolisant Study Easier

Harmony Biosciences recently announced changes to their Phase 2 Clinical Trial of Pitolisant that reduce the requirements of participating in the study.
February 24, 2022 Read More

Topics: Research

FPWR Board President 'Find What Brings You Hope'

A special contribution by guest blogger Jeannine Kowal, FPWR Board President Share your story via our Stories of Hope Questionnaire. Caitlin's birth was uneventful. Caitlin's birth was induced at thirty‑nine and a half weeks because of growth concern...
February 22, 2022 Read More

Topics: Stories of Hope

Identifying Mental Health Issues in People with PWS [2021 CONFERENCE VIDEO]

In this one hour and 9‑minute video, Dr. Lauren Schwartz Roth, a clinical psychologist and parent to a young adult with PWS, explains how parents and caregivers can effectively assess and manage mental health issues if they arise in loved ones with P...
February 9, 2022 Read More

Topics: Research

New Study of ARD-101 Now Enrolling Participants Ages 17-65

ARD-101 is a new, oral therapeutic that has shown promising activity in reducing appetite and promoting weight loss in preclinical (animal model) studies.
February 4, 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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