Foundation for Prader-Willi Blog

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), K...

July 10, 2024 Read More

Topics: Stories of Hope, Parents

Announcing the FPWR Olympics!

Just like the elite athletes competing in the Olympic Games, our community is passionate, dedicated, and persistent in their pursuit of victory! As our Olympians aim for gold, we are relentlessly working towards treatments for Prader-Willi and Schaaf...

July 3, 2024 Read More

FPWR Joins the Rare Disease Diversity Coalition

Improving diversity, equity, inclusion, and accessibility (DEIA) in PWS clinical research is a priority for FPWR, and we are working to partner with experts and other patient groups working in this area. FPWR has recently joined the Rare Disease Dive...

July 2, 2024 Read More

Topics: News

Soleno Therapeutics Submits New Drug Application for DCCR

We are excited to share the news that Soleno Therapeutics has submitted its New Drug Application (NDA) for DCCR to the FDA. This application is seeking approval for DCCR to treat hyperphagia in people with PWS ages 4 and older. The FDA has a 60-day f...

June 28, 2024 Read More

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing memorable Live Life FU...

June 25, 2024 Read More

Topics: Stories of Hope, Parents

Empowering Diversity and Inclusion for the PWS Community

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals livi...

June 20, 2024 Read More

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

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...

June 18, 2024 Read More

Topics: Research

Understand Drug Development for Rare Diseases: Free Online Series

Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational seri...

June 18, 2024 Read More

Topics: Parents, Learning

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

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...

June 13, 2024 Read More

Topics: Research

FPWR Blog

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22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Announcing the FPWR Olympics!

FPWR Joins the Rare Disease Diversity Coalition

Soleno Therapeutics Submits New Drug Application for DCCR

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Empowering Diversity and Inclusion for the PWS Community

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

Understand Drug Development for Rare Diseases: Free Online Series

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

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