May 21, 2015– With gratitdue, Susan Hedstrom, Executive Director of the Foundation for Prader-Willi Research (FPWR), a nonprofit organization dedicated to supporting research to advance the understanding and treatment of Prader-Willi syndrome, announced today that FPWR has received the organization’s largest donation to date. Philanthropists Leon and Irina Shaulov contributed $1 million in support of the organization’s research programs and clinical initiatives.
“Our gift signifies our tremendous trust and belief in the extraordinary work of the scientists and researchers who are funded by FPWR. We are extremely proud to work with this exceptional foundation whose goal is to identify and fund the most scientifically advanced medical research and therapies to combat and treat this genetic disorder. It is truly our most important investment, because it impacts the lives of thousands of children, the families that love them, as well as increasing their potential of becoming positive and inspiring members of our communities,” said Leon Shaulov.
The announcement of this generous gift coincides with national Prader-Willi syndrome Awareness month.
“This transformational gift has provided FPWR with the necessary resources to add a full-time Director of Clinical Research and to foster a collaboration of scientists and representatives from the Pharmaceutical industry to advance treatments for PWS. This investment will undoubtedly accelerate our research program and with the addition of our newest team member: Nathalie Kayadjanian, Ph.D, we believe we will be able to facilitate the translation of projects from early stage research in laboratories to treatments in the clinic. This is a huge moment in our organization’s history and we are immensely grateful for the leadership and generosity of the Shaulov family,” said Susan Hedstrom, FPWR Executive Director.
Prader-Willi syndrome (PWS) is a rare, genetic disorder affecting approximately 1 in 15,000 people. Nearly every system in the body is impacted by a PWS diagnosis but the hallmark symptom is extreme hunger. A person with PWS never feels full. There are currently no effective treatments to regulate appetite in PWS. Additional associated problems include growth hormone deficiency, behavioral challenges, intellectual disability, anxiety, sleep disturbances, and scoliosis.
FPWR is composed of thousands of parents, family members, researchers, and others who are interested in addressing the many issues related to PWS, including childhood obesity, developmental delays, psychiatric disorders, and autism spectrum disorders. The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. FPWR supports cutting edge research studies around the world to advance the understanding of PWS, and collaborates with research institutions, pharmaceutical companies and the FDA to advance new treatments that will help those with PWS. To date, FPWR has funded over $5 million in PWS research. For more information please visit https://www.fpwr.org/.