WASHINGTON, DC—Representatives Paul D. Tonko (D-NY) and Maria Elvira Salazar (R-FL) today introduced their bipartisan resolution designating May 15th as Prader-Willi Syndrome Awareness Day. Prader-Willi Syndrome (PWS) is a rare genetic disorder that results from an abnormality on the 15th chromosome.
PWS is a variable and complex genetic neurobehavioral disorder—and the most common of the genetic disorders that cause life-threatening obesity in children. Among other symptoms, PWS can cause low muscle tone, delayed puberty, cognitive deficits, compulsive behavior, and a chronic feeling of hunger.
“Rare and ultra-rare diseases pose numerous challenges for the millions of Americans living with a disease, from a lack of available treatments to less public awareness and medical expertise,” Congressman Tonko said. “This leaves patients and their loved ones with few places to turn. I authored the HEART Act to help amplify the voices of patients and families living with rare diseases and provide hope and possible treatments to those affected. My work to uplift the needs of those living with these rare conditions is far from over. I’m proud to introduce this resolution on Prader-Willi Syndrome alongside Rep. Salazar and am thankful to all those who have added their voice to raise awareness on this disorder.”
“Prader-Willi syndrome (PWS) is a rare genetic disorder which has a lifelong impact on individuals living with PWS, their families and caregivers. There is nothing more important than the health and well-being of our most vulnerable communities,” said Rep. Salazar. “I remain committed to ensuring families impacted by rare diseases like PWS get the help and resources they need, which is why I am happy to support this resolution declaring May 15th as Prader-Willi syndrome awareness day.”
“Securing May 15th as PWS Awareness Day in the United States has been a priority for PWSA | USA, and we are thrilled to see it come to fruition. Thank you to Congressman Tonko and Congresswoman Salazar for supporting this resolution and, in turn, the many families and individuals affected by PWS. When we are united, our hard work, dedication, and HOPE can become a reality. I am proud to say we are witnessing that today,” said PWSA | USA CEO Paige Rivard, MBA.
Full text of the resolution can be read HERE.