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Research Blog

Top 10 Reasons to Come to the FPWR Conference This Year

The FPWR Family Conference takes place October 4-6, 2018, in Las Vegas, NV. Here are the top 10 reasons you need to be here! 

10...

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 dialogue about the clinical trial process. FPWR does not advocate certain trials over others...

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 enhance the collection and distribution of high-quality tissue to researchers. 

 

 

Diazoxide Reduces Body Fat In Mice Lacking PWS-Region Gene

Many thanks to Dr...

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...

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 recommendations for screening. The study was done at the Children’s Hospital Colorado, exa...

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.

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

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 with many volunteers and caregivers and now have begun to build an understanding of the enormous challenges you face on a daily basis and the incredible investment you're making in FPWR’s research to improve the lives of individuals with PWS.

Recently Published 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...