New call-to-action
New call-to-action
New call-to-action

Foundation for Prader-Willi Blog | News (8)

Phase 2 Study Announced: Tesomet for PWS Weight Loss, Hyperphagia

Saniona has announced it will continue its phase 2 study of Tesomet for Prader-Willi syndrome. Saniona is developing Tesomet as a potential treatment for PWS patients to help with weight-loss and reduce hyperphagia (excessive hunger). The study, whic...

Topics: News

Cannabidiol (CBD) Oral Solution for PWS: Phase 2 Clinical Trial Begins

INSYS Therapeutics recently initiated a Phase 2 clinical trial of its cannabidiol (CBD) oral solution for evaluation of safety and efficacy in pediatric patients with Prader-Willi syndrome. The INSYS study will measure the effect of the company’s pro...

Topics: News

New PWS Publications In High-Impact Medical Journals

Researchers are making progress every day toward FPWR's mission of eliminating the challenges of PWS and advancing therapeutic development. When their discoveries are published, that's an exciting moment for our community! So far in 2018, two notable...

Topics: News

ICD-10 Coding Adventures! Why PWS Needs Its Own ICD-10 Code

A big shout out to Dr. Dan Driscoll today! He is at a meeting of the ICD-10 Coordinating & Maintenance Committee (CMC) in Baltimore, making the case that PWS should have its own, unique ICD-10 code. What’s an ICD-10 code, you may ask? That’s the ...

Topics: News

You Do You! New 'Take Action' PWS Fundraising Tool

When it comes to fundraising for PWS research, I've got good news, and I've got good news: First, in 2017, our community raised $3,200,000 for PWS research! Thanks to everyone who fundraised or supported a fundraiser, last year FPWR funded 18 researc...

Topics: News

Welcome FPWR's New CEO, John Walter

Please join me in welcoming FPWR's newest team member, Chief Executive Officer John Walter! Walter has dedicated his entire professional career to the non-profit sector, with over 30 years of experience in the field. Former CEO of the Leukemia and Ly...

Topics: News

FPWR Gives Thanks – To All Who Give Us Hope for the Future!

This Thanksgiving, the FPWR team is thankful for: The amazing group of dedicated researchers and clinicians around the world working to tackle the hard problems of PWS. From defining new clinical trial endpoints to helping parents improve how we care...

Topics: News

Team Eva Grace Runs TCS Marathon to 'E-race' PWS

From Survivor to Marathon Fundraiser “In 2012, I experienced the worst and best year of my life," says Ronda. "In one week, I gave birth to twins, nearly lost one of them, and experienced my first hurricane. The following weeks brought rare disease d...

Topics: News

Mom Urges Parents to 'Build Our Village' By Joining the PWS Registry

I'm thrilled to announce the Global PWS Registry, launched in 2015, now has more than 1,100 participants enrolled! If you haven't enrolled, please visit the registry website today to get started. If you have enrolled, please update your information i...

Topics: News