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FPWR Blog

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Total Hip and Knee Arthroplasty In PWS: Van Bosse Research

Issues with bone development and structure are very common in individuals with Prader-Willi syndrome (PWS). While most people in the PWS community are familiar with issues spinal issues, in particular scoliosis, people with PWS are also at higher ris...
October 9, 2017 Read More

Topics: Research

Bringing PWS Caregiver Perspectives Into the Development of Therapies

The Prader-Willi Syndrome Clinical Trials Consortium (PWS-CTC) was created in 2015 to address challenges and accelerate clinical trials for PWS. Key challenges include better understanding the progression of the disease (or natural history), developi...
October 4, 2017 Read More

Topics: Research

The PWS Registry: How It Can Help You [VIDEO]

This blog provides a brief summary of the PWS Registry presentation by research team member Jessica Bohonowych at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below. In case you don't have time to wa...
October 3, 2017 Read More

Topics: Research

Team Eva Grace Runs TCS Marathon to 'E-race' PWS

From Survivor to Marathon Fundraiser “In 2012, I experienced the worst and best year of my life," says Ronda. "In one week, I gave birth to twins, nearly lost one of them, and experienced my first hurricane. The following weeks brought rare disease d...
September 29, 2017 Read More

Topics: News

FPWR's Fall 2017 PWS Research Update

At FPWR, we're fortunate to have a strong community of supporters who are leading the charge so our loved ones with PWS can one day lead FULL and independent lives! Thanks to their commitment to PWS research, FPWR has initiated a number of research p...
September 27, 2017 Read More

Topics: Research

FPWR Research Team: Town Hall Session on PWS Research [VIDEO]

This blog provides a brief summary of the FPWR Research Team: Town Hall Session on PWS Research, a series of four presentations at the FPWR 2017 conference. You can watch the full FPWR Research Team: Town Hall Session on PWS Research presentations he...
September 25, 2017 Read More

Topics: Research

Singing, Dancing, Changing the World: Our Mighty Girl With PWS

A special contribution by Noelle Scalzo Our story started out as so many others do with the dream of a "perfect" and "healthy" baby. We wanted to bring just one more tiny human into our world, a sibling for our now 4 year old Danica to play with and ...
September 22, 2017 Read More

Topics: Stories of Hope

Hyperphagia Biomarkers in Children With PWS: Elizabeth Roof [VIDEO]

This blog contains excerpts from Hyperphagia Biomarkers in Children With PWS, a presentation given by Elizabeth Roof at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below. In case you don't have time...
September 21, 2017 Read More

Topics: Research

Dr. Jennifer Miller: Standards of Care for PWS

This blog provides a brief summary of Standards of Care for PWS, a presentation given by Dr. Jennifer Miller at the FPWR 2017 conference. We've captured some of the key points in the notes below. Dr. Jennifer Miller, a pediatrician and researcher at ...
September 18, 2017 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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Our Mission

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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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