Congress Votes to Establish Prader-Willi Syndrome Awareness Month

Submitted by admin on Tue, 2009-12-08 18:11
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WASHINGTON, D.C. -- December 8, 2009 --  In a majority vote with bipartisan support, the House of  Representatives today passed House Resolution 55. Introduced by Reps.  Ed Royce (R-CA) and Jane Harman (D-CA), the resolution establishes an  awareness month for Prader-Willi syndrome (PWS), a rare genetic illness affecting one in 10,000 people.

"This important resolution marks a real turning point in the fight  against PWS," said Lauren Schwartz Roth, Ph.D., President of the  Foundation for Prader-Willi Research (FPWR). "In addition to  establishing an awareness month, the resolution recognizes the  importance of awareness and early diagnosis, and recognizes the  efforts and commitment of patient advocacy groups such as the FPWR."

Theresa Strong, Ph.D., Chair of the FPWR's Scientific Board, also  applauded the passage of H Res 55. "Research into the causes of PWS  has implications far beyond those for our loved ones. Unlocking the  key to PWS will also benefit the many people who suffer from related  diseases such as childhood obesity and autism." In November 2009, Dr.  Strong chaired a multidisciplinary workshop at the National Institutes  of Health focused on creating a comprehensive research strategy for  PWS. "This recognition by Congress of the importance of PWS research  supports the valuable work of the NIH and scientific community in reaching a better understanding of the disease," said Dr. Strong.

Prader-Willi syndrome causes insatiable hunger, mental retardation,  and significant behavioral problems. At present, most people with PWS  require constant supervision and cannot live independently because of  their virtual "addiction" to food. Although patients derive some  benefit from growth hormone, no effective treatments for the hunger  caused by PWS have been found, and no cure is imminent. "We have great  hope that the passage of House Resolution 55 will lead to a bright and unlimited future for all those who suffer from PWS," said Dr. Roth. "We are deeply appreciative to Reps. Royce and Harman for their hard work and support."