Foundation for Prader-Willi Blog

FPWR

Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

A special blog contribution from Abbie Ogilbee Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for t...

December 5, 2023 Read More

Topics: Stories of Hope

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last several years, there ...

November 29, 2023 Read More

Topics: News, Clinical Issues, Resource Development

Grandma Runs the NYC Marathon in Honor of Grandchild

A special blog contribution from Karla Leighty. Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller ...

November 15, 2023 Read More

Topics: Stories of Hope

From Holidays to Baby Showers: Your Custom Card Can Make A Difference

Did you know that by simply sending a card, you have the power to make a difference in the lives of those affected by Prader-Willi syndrome? It's true! Every time you send a card, you not only spread awareness about this rare genetic syndrome but als...

November 7, 2023 Read More

Topics: Advocacy

Recordings from FPWR’s Annual Family Conference: What’s Next for DCCR?

Soleno Therapeutics recently shared data from their DESTINY PWS study, an international, placebo-controlled Phase 3 study of DCCR (Diazoxide Choline Controlled-Release) drug trial. To further establish the effects of DCCR administration on hyperphagi...

October 25, 2023 Read More

Topics: News, Hunger Satiety, Research

FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS

PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR ...

September 27, 2023 Read More

Soleno Therapeutics Announces Positive Statistically Significant Top-line Results from Randomized Withdrawal Period of Study C602 of DCCR for Prader-Willi Syndrome

We are excited to share the news that Soleno has announced positive, statistically significant top-line results from the randomized withdrawal period of study c602 of DCCR for Prader-Willi Syndrome. In the study, patients taking DCCR showed a highly ...

September 26, 2023 Read More

Artist of the Year 2023 Winners

A special blog contribution from our 2023 FPWR Art Auction Participants! Our 2023 Artist of the Year competition was a great success, raising critical funds for PWS research! We extend our heartfelt gratitude to all our extraordinary artists who part...

August 8, 2023 Read More

Topics: Stories of Hope