Foundation for Prader-Willi Blog (12)

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

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

One of the most important roles FPWR serves is that of a ‘convener’, bringing together those with an interest in advancing the science of PWS, and the care of those living with PWS. On Oct 5-6, 2023, FPWR held its annual PWS Research Symposium – our ...

November 20, 2023 Read More

Topics: Research, Learning

Karla 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

FPWR Announces 2nd Round of 2023 Grants

We are pleased to announce the recipients of the second round of grants for 2023, totaling $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 Schaaf-Ya...

November 14, 2023 Read More

Topics: Research, Schaaf-Yang Syndrome

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

2023 Harvesting Hope Distance Challenge: Make a Real Difference

The Harvesting Hope Distance Challenge is back, and it's your chance to join a heartwarming community, get moving, and make a real difference. Whether you're a seasoned walker, a jogging enthusiast, or someone who just loves the idea of taking positi...

October 3, 2023 Read More

Topics: News

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

FPWR Blog

Categories

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

2023 PWS Research Symposium - Sharing Progress, Fostering Collaborations

Karla Runs the NYC Marathon in Honor of Grandchild

FPWR Announces 2nd Round of 2023 Grants

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

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

2023 Harvesting Hope Distance Challenge: Make a Real Difference

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

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

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