In September, we were honored to host our annual meeting of researchers, physicians, and pharmaceutical companies interested in Prader-Willi or Schaaf-Yang syndromes. This event is consistently invigorating as the leaders in PWS/SYS research not only...
As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachus...
Topics: Research
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics' DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency'...
Topics: Research
70% of cases of Prader-Willi syndrome are associated with a “deletion” of 5,000–6,000 missing base pairs (bp) of DNA on the paternally inherited copy of chromosome 15. What are the biological consequences of the larger 6,000-bp deletion (typically ca...
Topics: Genetics and Imprinting, Research
If your loved one with PWS struggles with daytime sleepiness, you may be interested in learning more about TEMPO, a phase 3 study of Pitolisant, now enrolling volunteers with PWS ages 6 to 65 years old. This study will evaluate the efficacy of Pitoli...
Topics: Research
Prader-Willi syndrome (PWS) is a complex genetic disorder with a range of challenging symptoms, including hyperphagia (excessive hunger), obesity, and behavioral issues. Despite these challenges, recent advancements in medical research and therapeuti...
Topics: Research
The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the PW...
Topics: Resource Development, Research, Parents
We are pleased to announce the recipients of our first round of grants for 2024, totaling more than $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and ...
PWS impacts many aspects of our children’s lives. The hallmark struggle for those affected by PWS is hyperphagia, or excessive appetite. But beyond hyperphagia, individuals with PWS are susceptible to other behavioral and emotional problems that affe...
Topics: News, Resource Development, Research, PWS People
