By Stacy Ward
May is National PWS Awareness Month! PWS Awareness Month came to be thanks to the efforts of Amy Porter and Prader-Willi California Foundation members, Tom and Renay Compere, who brought the syndrome and the needs of the PWS community to the attention of Republican Congressman Ed Royce and Democratic Congresswoman Jane Harman. The latter two cosponsored the original House Resolution which passed in December 2009, and then in the Senate on May 27, 2010, thereby establishing National Prader-Willi Syndrome Awareness Month.
Prader-Willi syndrome is one of over 7,000 rare diseases. This means many (if not most) physicians, educators, and therapists are unfamiliar with the syndrome. The same is generally true of family, friends, and neighbors who won’t innately understand the complexities of caring for and supporting someone with PWS. That’s why May Awareness Month is so important…Awareness is the first step towards creating a more understanding and supportive environment for individuals and families living with PWS. PWSA (USA) is committed to raising awareness about Prader-Willi syndrome and the unique needs of the PWS community.
With your help, we can raise awareness about Prader-Willi syndrome by spreading information and education across the world until everyone understands how the can help empower those living with PWS. Here are some ways you can get active in the awareness movement and help us save and transform lives:
- Host an event (bowl-a-thon, 5k, kickball tournament, etc.) to raise funds for your state chapter or PWSA (USA)
- Make an appointment to speak with local government officials
- Contact your representatives and teach them about PWS
- Organize a training session to teach local first responders about how to care for individuals with PWS