Foundation for Prader-Willi Blog (41)

Clinical Trials 101: What You Should Know About PWS Clinical Trials

It is an exciting time in PWS research, with multiple new clinical trials on the horizon this spring and through the end of 2018! There is already buzz throughout the community about upcoming studies, providing a wonderful opportunity for an open dia...

April 13, 2018 Read More

Topics: Research

Brain Tissue Donation: A Crucial Way to Advance PWS Therapies

FPWR is partnering with Autism BrainNet to collect and study post-mortem brain donations. Through this partnership, we aim to raise awareness about the importance of post-mortem brain donation, streamline the donation process for families, and enhanc...

April 10, 2018 Read More

Topics: Research

Diazoxide Reduces Body Fat In Mice Lacking PWS-Region Gene

Many thanks to Dr. Wevrick for contributing to this blog. A newly published study has shown that mice taking a diazoxide treatment lost weight, and that this occurred even in mice lacking the PWS-region gene, Magel2. The study, which is the first lon...

April 3, 2018 Read More

Topics: Research

PWS Places High Burden on Caregivers, New Publication Reports

PWS places a high burden on caregivers, impacting many aspects of their lives, according to a new publication in PLOS. The publication, High Levels of Caregiver Burden In Prader-Willi Syndrome, is the first stemming from the work of the PWS Clinical ...

March 29, 2018 Read More

Topics: Research

Hip Dysplasia in PWS May Be More Common Than Thought, Study Suggests

Many people with PWS have at least one orthopedic (bone/muscle) problem. A recent paper examines the how often hip dysplasia occurs in children with PWS (spoiler alert — it may happen more often than was previously thought), and offers new recommenda...

March 27, 2018 Read More

Topics: Research

My Son Can Do Anything He Sets His Mind To

A special contribution by guest blogger Marissa Marinan Marissa shared her story via our Stories of Hope questionnaire.

March 23, 2018 Read More

Topics: Stories of Hope

2018 PWS Research Symposium and Family Conference - We Can, We Will!

March 19, 2018 Read More

Topics: Research

From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

As my second month in my new role as FPWR's CEO concludes, I would like to reflect on some of my early observations and experiences with this truly incredible Prader-Willi community. During the short time I've been in this role, I've met or spoken wi...

March 16, 2018 Read More

Topics: Stories of Hope

Study Compares Schaaf-Yang and Prader-Willi Syndromes

Dr. Christian Schaaf and his group, in collaboration with Dr. Jennifer Miller, has published a new study examining clinical similarities and differences between Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS). Dr. Schaaf was the first to d...

March 14, 2018 Read More

Topics: Research, SYS

FPWR Blog

Categories

Clinical Trials 101: What You Should Know About PWS Clinical Trials

Brain Tissue Donation: A Crucial Way to Advance PWS Therapies

Diazoxide Reduces Body Fat In Mice Lacking PWS-Region Gene

PWS Places High Burden on Caregivers, New Publication Reports

Hip Dysplasia in PWS May Be More Common Than Thought, Study Suggests

My Son Can Do Anything He Sets His Mind To

2018 PWS Research Symposium and Family Conference - We Can, We Will!

From the CEO's Desk: Together We Can Make Cutting-Edge PWS Research Possible

Study Compares Schaaf-Yang and Prader-Willi Syndromes

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