DIRECT ASSISTANCE TO FAMILIES
One of the principle functions of PWSACO is to offer financial and emotional support to Colorado families facing the challenges of PWS. PWSACO:
- PROVIDES scholarships to families requiring financial assistance with treatments that were not covered by medical insurance or which were beyond the family’s means. Learn More Today
- PROMOTES a local respite care option for PW families.
- MANAGES a website accepting online donations and providing critical information for families and caregivers.
- COORDINATES presentations from nationally recognized doctors and helped set up family specific consultations.
- PLANNES social gatherings and informational meetings.
FUNDING FOR MEDICAL RESEARCH
PWSACO believes research is the key to unlocking critical treatments and, ultimately, the cure for PWS. Continuing its commitment to advancing research, PWSACO contributes its research dollars to The Foundation for Prader-Willi Research (FPWR) . FPWR’s mission is to eliminate the challenges of PWS through the advancement of research. With guidance from the Scientific Advisory Board, FPWR funds projects that are both scientifically meritorious and highly relevant for individuals with PWS.
PRADER-WILLI SYNDROME CLINIC
PWSACO has been diligently working to establish a multi-disciplinary clinic for children with PWS at The Children’s Hospital in Aurora, Colorado. The clinic provides the convenience of one appointment for multiple services for PW families, and coordinated care and communication between the doctors caring for PW patients. The first clinic was June 2011. Learn More Today
ADVOCACY AND COMMUNITY AWARENESS
Increasing awareness of PWS in the medical, educational, philanthropic, and larger communities is a priority for PWSACO. Progress in this area is demonstrated by:
- Increased attendance at the annual Kentucky Derby fundraiser where many new families learn about PWS. The event moved to the Cable Center in 2009 to accommodate more people, was advertised in Westword, and received media coverage in 2011.
- Recognition by local foundations through 13 grant applications and the first grant awarded from the Build-A-Bear Workshop Bear Hugs Foundation.
- Efforts on Capitol Hill to establish May as National Prader-Willi Awareness Month. PWSACO hired a lobbyist and met with congressional staff to get the bill passed in the House and Senate.
PWSACO financial supports the national organization, Prader Willi Syndrome Association (USA) and its many programs.