US Senate Resolution Passes Supporting Designation for National Prader-Willi Syndrome Awareness Month

Share Article

US Senate Resolution follows US House of Representatives Resolution and Gives Families Renewed Hope

Families affected by Prader-Willi syndrome (PWS) are rejoicing in a recent US Congressional decision. On May 27, 2010, a Senate Resolution passed recognizing a national PWS awareness month. PWS is a rare and life-threatening genetic condition. Left untreated, many who have it will succumb to syndrome related complications by early adulthood.

Senator Robert Menendez (D-NJ) sponsored and Senators Patrick Leahy (D-VT) and Benjamin Cardin (D-MD) co-sponsored and submitted to the US Senate S. Res. 543 “Expressing support for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research on the disorder.” The 111th Congress 2d session considered and agreed to the resolution without amendment and with a preamble by unanimous consent. Both houses in US Congress have now recognized a National PWS Awareness Month. In December 2009, the US House of Representatives passed House Resolution 55, introduced by Reps. Ed Royce (R-CA) and Jane Harman (D-CA).

These resolutions provide more credibility for the work of PWS organizations. Low awareness of PWS has hindered the lives of those living with this serious and debilitating medical condition and their families. It is estimated that up to 72% of those who have PWS nationally live with the syndrome unknowingly or have not contacted Prader-Willi Syndrome Association (USA) for much needed support. A diagnosis simply requires a blood withdrawal and DNA testing.

Families coping with the syndrome face the highest levels of stress. Because PWS affects so many aspects of development, extensive intervention is needed starting in infancy, including physical, occupational, speech, and behavior therapies, nutrition strategies, and endless appointments with a multitude of physician specialists (endocrinology, urology, respiratory, neurology, ophthalmology, geneticist, orthopedics, and more). This does not include countless hours needed to develop special education plans, advocate for health insurance coverage, or deal with feelings associated with peer relationships, many times marked by unkindness of others not familiar with PWS. The emotional and financial toll can be quite high.

“A National PWS Awareness Month helps to increase diagnoses, save lives, funnel funds for critical research, improve life quality, and help with the isolation many experience who are affected by PWS,” said Janalee Heineman, Director of Research and Medical Affairs of PWSA (USA), and parent to an adult child with PWS.

“Our hope is that this resolution will bring awareness and education about PWS and encourage continued research of this syndrome,” said Senator Menendez.

Representative Royce said in his floor statement to the House of Representatives:

"Twenty years ago, a child with Prader-Willi syndrome was likely to die of morbid obesity before they reached their 20th birthday. Most of these children were either never diagnosed, or diagnosed later in life when treatment was less effective…. We want to increase awareness of this genetic disorder among health care providers, pediatricians, parents, teachers, and communities. We want children to get diagnosed early so that they can begin immediate treatment. We want parents to be able to find the information that they need to make decisions about the treatment and development of their children. We want teachers to understand the cognitive and emotional struggles that come with Prader-Willi and that must be dealt with in order for these children to learn. We want neighbors and community members to learn about this Syndrome so that they will understand the actions and behaviors of some of the children with Prader-Willi so that they will not reject them outright and will instead teach their own children about the acceptance of differences."

PWS is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. Although considered a rare disorder, PWS is one of the most common conditions seen in genetics clinics with an estimated occurrence of 1 in 12:000 to 15:000 births. It is the most common known genetic reason for life-threatening obesity. Currently there is no cure and, to date, no medications or procedures are successful in staving off the constant hunger, although growth hormone treatment has great benefit. Early diagnosis and intervention saves lives and can reduce challenges faced by families dealing with PWS.

Prader-Willi Syndrome Association (USA) gratefully acknowledges Senators Menendez, Leahy and Cardin, and Representatives Royce and Harman, and encourages others to contact and thank them at:

To read the full Senate resolution text, go to
http://thomas.loc.gov/cgi-bin/query/z?c111:S.RES.543:

To read the full House resolution text, go to
http://thomas.loc.gov/cgi-bin/query/D?c111:2:./temp/~c1119w628W::

PWSA (USA) is a 501(c)(3) charity that helps children and adults with PWS and their families through every stage of life via support, education, advocacy and research funding. For more information, visit http://www.pwsausa.org.

###

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Visit website

Media