Foundation for Prader-Willi Blog | News

Two Moms, 5 Years and $1.7M for PWS Research

Becky McWilliams and Samantha (Sam) Chipetz are a force to be reckoned with! In addition to managing successful careers and juggling a family, therapy appointments and play dates, these two hard working moms have been fundraising for PWS research for more than 5 years! Dedicated to finding treatments for the challenges that their sons, Brandon and Kieran, face on a daily basis, Sam and Becky have hosted walks, galas and other fundraising activities which have collectively raised over $1.7 million! 

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 research grants, 2 novel drugs, 2 medical devices, 4 clinical trials, 6 models of PWS! 

Now for the good news: to kick off 2018, we've launched a new Take Action page on our website to give you more ways to support PWS research, including:

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 Lymphoma Society, Walter is an accomplished leader with a proven track record of building successful organizations. At FPWR, he'll play a crucial role in our next phase of growth and will work with the FPWR team to accelerate research and the development of therapies for PWS.

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 for our children and giving us hope for the future.

Topics: News

The PWS Registry: How It Can Help You [VIDEO]

This blog provides a brief summary of the PWS Registry presentation by research team member Jessica Bohonowych at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below.

In case you don't have time to watch the full video, we've captured some of the key points in the notes below.

Jessica Bohonowych, Ph.D., has a doctorate in Pharmacology and Toxicology from the University of California, Davis. Her presentation described the Global Prader-Willi Syndrome Registry and how it’s accelerating PWS research and clinical trials.

Topics: News, Research

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

On November 5, 2017, 15 dedicated runners will cross the finish line of the TCS New York City Marathon in support of FPWR. We're extremely excited to have representation from around the United States and even Belgium representing TEAM FPWR, to help raise awareness and mission critical funds.

Ronda Jensen, mother to Eva Grace, decided to take part in her “marathon of fundraising” this year with three dear friends by her side. Here's her story of her PWS journey so far, and what led her to run the TCS Marathon in support of FPWR.

Topics: News

FPWR's Fall 2017 PWS Research Update

At FPWR, we're fortunate to have a strong community of supporters who are leading the charge so our loved ones with PWS can one day lead FULL and independent lives! Thanks to their commitment to PWS research, FPWR has initiated a number of research projects this year. Below is our quarterly update highlighting just a few of the projects that our supporters have made possible!

Topics: News, Research

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 in the registryIt's very likely that over the past year, your management of PWS has changed — it's crucial to track these in the registry.

One PWS mom who has participated in the registry is Ali Shenk. I recently asked her to talk about her experiences joining the PWS registry and what she's gained from the experience — read below for her responses.

Topics: News

Scientific Day 2017: PWS Science Highlights & Abstracts

FPWR’s 2017 Scientific Day was held in conjunction with the FPWR annual conference on Thursday, August 24th in Indianapolis, Indiana. Approximately 75 people attended, including scientists, families and professionals from the pharmaceutical industry.

The meeting included 16 oral presentations and 6 posters, the majority of which represented FPWR funded projects. They covered a variety of PWS science topics including genetics, cell biology, clinical studies, mental health and more. The day was marked by vigorous discussions, cross-fertilization of ideas, and the formation of new collaborations.

Topics: News, Research

The Nelson Family: Paving the Way for Schaaf-Yang Research

In 2014, when Emma Nelson was born, NICU staff told her parents, Kim and Justin, to prepare for the worst.

But for the next two years, Emma had no diagnosis. Kim and Justin were directed from one specialist to the next trying to find answers to their daughter’s unique symptoms. 

In the fall of 2016, Emma underwent whole-exome sequencing, which revealed a single mutation in the MAGEL2 gene, a mutation that was too small to be detected on less-refined tests. Finally, the Nelsons had the diagnosis they had been searching for. Their daughter had an ultra-rare genetic disorder: Schaaf-Yang Syndrome (SYS). Emma was only the 28th patient to be diagnosed.

Topics: Stories of Hope, News

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