Foundation for Prader-Willi Blog (9)

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

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'...

September 3, 2024 Read More

Topics: Research

FDA Accepts DCCR Filing and Grants Priority Review

Soleno Therapeutics announced today that the U.S. Food and Drug Administration (FDA) has accepted their New Drug Application (NDA) and granted priority review for DCCR (Diazoxide Choline Controlled-Release), a treatment for patients with Prader-Willi...

August 27, 2024 Read More

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

Most cases of Prader-Willi syndrome (PWS) are caused by a deletion on the paternally inherited copy of chromosome 15, but not all deletions are the same. Researchers recognize two main types—Type 1 (T1) and Type 2 (T2)—which differ in the size of the...

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

FPWR 2024 Family Conference: Deep Dive Workshops

You won’t want to miss these speakers at the 2024 FPWR Family Conference this September in Atlanta, GA. This year's conference has something for every parent traveling this PWS and SYS journey. Attend interactive workshops designed to provide practic...

July 17, 2024 Read More

Topics: Parents, Adults, Children 0-3, Children 3-6

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 Blog

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FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

FDA Accepts DCCR Filing and Grants Priority Review

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

FPWR 2024 Family Conference: Deep Dive Workshops

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

Announcing the FPWR Olympics!

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