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Foundation for Prader-Willi Blog | News (9)

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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...
March 8, 2018 Read More

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 ...
March 7, 2018 Read More

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...
January 25, 2018 Read More

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...
January 19, 2018 Read More

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...
November 23, 2017 Read More

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...
September 29, 2017 Read More

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...
September 13, 2017 Read More

Topics: News

Dream, Believe, Achieve: It's a Wrap! FPWR 2017 Conference

FPWR's 2017 family conference was our largest conference yet. With the theme Dream, Believe, Achieve, it attracted more than 230 PWS parents, grandparents, children, clinicians and researchers.
August 31, 2017 Read More

Topics: News

Feeding Challenges and PWS: Q&A With Speech Pathologist Sara Parker

Food, hunger, mealtimes, eating — these are all important issues for people with PWS and their families. Sara Parker knows all about feeding challenges and PWS. She's a speech pathologist who specializes in pediatric feeding and has spent more than t...
August 8, 2017 Read More

Topics: News, Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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