Foundation for Prader-Willi Blog

FPWR

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

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...

August 20, 2024 Read More

Topics: Genetics and Imprinting, Research

The Matesevac Family Welcomes You to Atlanta this September!

A special contribution by guest blogger Lisa Matesevac. Welcome to the ATL! We are thrilled that our city will host the annual Foundation for Prader-Willi Research Symposium and Family Conference in September 2024! Together with my family and the Geo...

August 6, 2024 Read More

Topics: Parents

PWS Advocacy Coalition Submits Petition to FDA for Priority Review of DCCR NDA

On Friday, August 2nd, the PWS Advocacy Coalition submitted a petition to the U.S. Food and Drug Administration (FDA), requesting the filing and priority review of the New Drug Application (NDA) for Soleno Therapeutics’ drug, DCRR. The petition signe...

August 5, 2024 Read More

FDA Grants Rare Pediatric Disease Designation to CSTI-500

The FDA has granted Rare Pediatric Disease Designation (RPDD) to ConSynance Therapeutics' new investigational drug, CSTI-500 for the treatment of Prader-Willi Syndrome in children and adolescents. This special status is granted to drugs and biologics...

July 26, 2024 Read More

Topics: News

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

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

FPWR Blog

Categories

FPWR

Recent Posts

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

The Matesevac Family Welcomes You to Atlanta this September!

PWS Advocacy Coalition Submits Petition to FDA for Priority Review of DCCR NDA

FDA Grants Rare Pediatric Disease Designation to CSTI-500

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

Announcing the FPWR Olympics!

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

About FPWR

Main Menu

Our Mission

Contact Us