Foundation for Prader-Willi Blog (28)

Social Skills and Cognition Challenges in PWS [2020 CONFERENCE VIDEO]

In this 75-minute presentation, experts Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and Lauren Schwartz-Roth discuss what we've learned about social skills and Prader-Willi syndrome. In particular, they discuss what we can do to addres...

March 18, 2021 Read More

Topics: Research

Neuren Pharmaceuticals Adds Prader-Willi Syndrome to Development Pipeline

Neuren Pharmaceuticals has added Prader-Willi syndrome to their development pipeline for compound NNZ-2591 following a successful study in a pre-clinical model. The study showed compelling benefits for treating key symptoms of PWS.

March 17, 2021 Read More

Topics: Research

Hoops to End Hunger - How One Family Turned March Madness into PWS Awareness

Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports. Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet bo...

March 12, 2021 Read More

Topics: Stories of Hope

Sign-on to Our Letter to Make Sure YOUR Voice Is Heard By the FDA

In a disappointing decision, the FDA has stated that they will not review DCCR for the treatment of PWS without an additional controlled clinical trial. (Read more about this recent news in our blog: FDA requires additional trial to support NDA submi...

March 11, 2021 Read More

Radius Health Adds Synthetic CBD to Development Pipeline for PWS

Radius Health has acquired a cannabidiol (CBD) compound and is preparing a PWS clinical trial using it. Radius Health believes that the drug has potential to reduce hyperphagia and improve anxiety symptoms in PWS. The news is of special interest to t...

March 9, 2021 Read More

Topics: Research

FDA requires additional trial to support NDA submission for DCCR in PWS

Soleno Therapeutics announced today that the FDA will require an additional controlled clinical trial to support an NDA submission for DCCR in PWS. This is despite pre-Covid data that showed statistically significant changes for DCCR compared to plac...

March 8, 2021 Read More

Saniona Receives U.S. FDA Orphan Drug Designation for Tesomet in Prader-Willi Syndrome

Saniona has received an orphan drug designation for their drug, Tesomet, for the treatment of PWS. Orphan drug designation is a special status granted by the FDA for drugs intended to treat rare diseases that affect fewer than 200,000 people in the U...

March 3, 2021 Read More

Your Child Will Be Your Hero

A special contribution by guest blogger Lindsey Larson Elliot earned the nickname “hero” before he was even born. I was 20 weeks along with our triplets, and I had noticed our only boy (Elliot), hadn’t moved in quite some time. Concerned, I called my...

March 2, 2021 Read More

Topics: Stories of Hope

Tonix Pharmaceuticals Licenses Technology for Treating Prader-Willi Syndrome

Tonix Pharmaceuticals has licensed technology using oxytocin-based therapeutics from the French National Institute of Health and Medical Research (INSERM) to treat Prader-Willi Syndrome. The co-exclusive license allows Tonix to expand its development...

February 26, 2021 Read More

FPWR Blog

Categories

Social Skills and Cognition Challenges in PWS [2020 CONFERENCE VIDEO]

Neuren Pharmaceuticals Adds Prader-Willi Syndrome to Development Pipeline

Hoops to End Hunger - How One Family Turned March Madness into PWS Awareness

Sign-on to Our Letter to Make Sure YOUR Voice Is Heard By the FDA

Radius Health Adds Synthetic CBD to Development Pipeline for PWS

FDA requires additional trial to support NDA submission for DCCR in PWS

Saniona Receives U.S. FDA Orphan Drug Designation for Tesomet in Prader-Willi Syndrome

Your Child Will Be Your Hero

Tonix Pharmaceuticals Licenses Technology for Treating Prader-Willi Syndrome

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