Dr. Elisabeth Dykens Recieves 2018 NORD Rare Impact Award

FPWR congratulates Dr. Elisabeth Dykens for her recent honoring with a Rare Impact Award by the National Organization for Rare Disorders (NORD).

Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperphagia Questionnaire, an assessment of the food-seeking behaviors common among individuals with Prader-Willi syndrome, which has become the gold standard for measuring outcomes in PWS clinical trials.

Her work has focused on examining psychopathology and areas of strength in persons with Intellectual or development disability, especially those with genetic syndromes.  Dr. Dykens is a leading researcher of mental health issues in Prader-Willi syndrome and has focused her research on issues of obsessive-compulsive behaviors, anxiety and social challenges that people with Prader-Willi syndrome (PWS) often struggle with.

A champion in shining light on issues in individuals with intellectual disability, Dr. Dykens co-chaired FPWR’s Prader-Willi Syndrome Mental Health Research Strategy Workshop in 2015 which contributed to the development of a research strategy to advance the science of mental health is PWS. Mental health and behavioral problems remain a major challenge for individuals with the syndrome and their families and caretakers, with significant impacts on quality of life.

Dr. Dykens has focused much of her research on coping and positive outcomes in families of persons with developmental disabilities, an often under-recognized area. Recently Dr. Dykens has been funded by FPWR for her innovative study to explore using telehealth approaches to teaching social skills and building friendships among teens and young adults with PWS. “Dr. Dykens thinks creatively and intensely about the issues people with PWS struggle with. She is a true thought leader in this field and a PWS research rock star,” stated Lauren Schwartz Roth.

"Successful research in any rare disorder includes the voices of affected individuals and their families,” says Elisabeth Dykens. “I have learned so much from people with PWS and their families and look forward to many new collaborations and studies that shine a light on the needs and strengths of people with PWS and their families.”

On behalf of FPWR, we thank you Dr. Dykens for your lifetime commitment to individuals with disabilities, particularly Prader-Willi syndrome. We are so appreciative of the work you have devoted to our cause!

About the Rare Impact Awards

The Rare Impact Awards is an annual event hosted by NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and brings together supporters of the organization’s mission. This year’s evening celebrates NORD’s 35 years as well as those who are boldly leading efforts to make a difference for people living with rare diseases.

About Prader-Willi syndrome (PWS)
Prader-Willi syndrome
is a rare, genetic disorder affecting approximately 1 in 15,000 people. PWS is a complex condition that impacts nearly every system in the body. The hallmark symptom of PWS is hyperphagia, an unrelenting appetite, and extreme hunger. A person with PWS never feels full.  There are currently no effective treatments to regulate appetite in PWS and individuals with PWS require a highly restricted environment to prevent life-threatening overeating and obesity. Additional associated problems include growth hormone deficiency, behavioral challenges, intellectual disability, anxiety, sleep disturbances, and scoliosis. For many individuals with PWS, the elimination of hyperphagia would represent a critical advance, bringing new possibilities for an independent life.

About Foundation for Prader-Willi Research (FPWR)
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 and therapeutic development. 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 $10 million in PWS research. For more information please visit https://www.fpwr.org.

Source: The Foundation for Prader-Willi Research


Categories: Pharmaceuticals and Biotech

Tags: hyperphagia, Prader-Willi Syndrome, PWS, rare disease

About Foundation for Prader-Willi Research

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Established in 2003, the mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

Foundation for Prader-Willi Research
340 S Lemon Ave #3620
Walnut, CA 91789
United States