May is PWS Awareness Month







The Global PWS Registry has officially launched! As of May 13, we have more than 400 registrants…help us reach our goal of 1,000 by May 31st. Take the PWS Registry Challenge today.


Clinical Trials Alert: Task Switching Studies

FPWR supported researcher Dr. Kate Woodcock is studying “task switching” difficulties in PWS.  People with PWS have deficits in their ability to task switch, and this may contribute to repetitive behaviors and temper outbursts.  Dr. Woodcock’s group is recruiting for three studies related to this issue. Opportunities are available for children ages 5-18.

One Small Step Season Has Officially Begun!

The first One Small Step event of 2015 took place on April 25 in Houma, Louisiana.  Approximately 200 participants came out to participate in the third annual Run/Walk event.  Host Maegan Richard, along with event planning committee members Kelly Robbins, Rebecca Loupe and Ashley McReynolds put together an incredible event and raised more than $27,000 for PWS research!

Year to date, One Small Step event fundraising has returned more than $200,000 for PWS Research.  If you haven’t registered to support, attend or host an event NOW is the time! Celebrate PWS Awareness Month by getting involved in your local community.

Questions? Contact seasoned OSS host and FPWR’s official One Small Step Coordinator Dana Capobianco today.


FPWR is very pleased to announce that we are now a participating organization ofThe Research Acceleration and Innovation Network (TRAIN), a FasterCures program that brings medical research innovators together to address challenges that cut across diseases.

TRAIN is a unique network of patient-driven nonprofit foundations that fund medical research across a spectrum of diseases. We are excited to join the forward-thinking organizations that comprise TRAIN and help advance research that is collaborative, mission-driven, results oriented and strategic in allocation of resources.

Read the official press release.

FPWR Annual Research Conference: It Starts With Us.

Austin conference 2015


You will not want to miss this educational and empowering event! Parents, caregivers and medical professionals are invited to learn the latest in PWS research while meeting others in the PWS community. The two day program includes presentations by Dr. Jennifer Miller, Dr. Jeffrey Zigman and Elizabeth Roof, experts in relevant therapies, and a second day dedicated to clinical trials information! For more details, visit

Mark Your Calendars!
Upcoming Events

For a list of One SMALL Step events, click here.

10th Annual DC Golf and Tennis Tournament
FPWR’s annual golf and tennis tournament returns to Belle Haven Country Club September 14, 2015. This spectacular event sponsored by the California State Society includes golf, tennis and awards. All proceeds benefit FPWR’s research programs. Register today!
September 14, 2015  – DC Metro – Alexandria, VA

FPWR Annual Conference
Join top experts in the field of PWS including Dr. Jennifer Miller and learn the latest in PWS research while meeting other families in the PWS community. This weekend of education and collaboration is not to be missed! Register now!!
September 25-27, 2015  – Austin, TX

Tommy’s Beef and Beer Benefit
October 4th is the big day in Conshohocken, Pennsylvania! Come out with the whole family for a fundraiser full of great food, tons of fun, and great company.  Buy tickets now!
October 4, 2015  – San Antonio, TX

Sadie’s Shoot Out
Join us on November 7th as we crush some clay for PWS research! Lunch, raffles and a super fun shoot out await you at the National Shooting Complex in San Antonio. Register now!
November 7, 2015  – San Antonio, TX

Big thanks to all of our amazing event hosts!!!!