About PWSA of Colorado

Mission

The Prader-Willi Syndrome Association of Colorado (“PWSA”) is committed to improving the quality of life and the life expectancy of those affected by Prader-Willi Syndrome (“PWS”), by funding research and providing emotional support and social services to those who have PWS or care for individuals with PWS. PWSA of Colorado works to increase awareness of PWS within society and the medical community, and actively supports research directed at improving diagnosis, quality of life, and most importantly, finding a cure.

PWSA of Colorado envisions a world where:

• Those diagnosed with PWS have treatments and interventions available that allow them to lead a normal life
• Common appetite & metabolic issues found in children with PWS today are medically controllable and no longer hinder them from functioning on their own in society
• Medical research has identified the common genes affected in those with PWS, and interventions and treatments are available to eradicate these deficiencies.
• PWS is commonly known both in the medical community and society
• Diagnosis is always done at birth

2008 Accomplishments:

2008 was an amazing year of accomplishment! We hit many new milestones in our growth!
Just four years ago, we were a small group of parents meeting on Saturdays to discuss and share how we and our children were faring with PWS. Outside of a bowl-a-thon fund raiser and some group gatherings, we were not actively promoting any research or support programs.

Today, PWSA of Colorado has had its best fund raising year ever, raising over $100,000! This has allowed us to accelerate our program services and increase our capacity to fulfill our mission.

AWARENESS: We have developed and promoted a new brand for PWSA (Still Hungry for a Cure).

RESEARCH: We committed fifty thousand dollars in 2008 to the Foundation for Prader-Willi Research to support research on PWS.

SUPPORT:  We continued to support families in Colorado through social gatherings, continued our ongoing support for PWSA USA’s operating fund, and we helped specific families in Colorado with their critical needs

2009 Objectives:

In 2009, we plan to expand our support for raising awareness of PWS, advancing research, and supporting families in Colorado and around the world. We have just hit the tip of the iceberg!

• Continue to support national advocacy and support through PWSA USA and its affiliates worldwide
• Expand our support for affiliate organizations focused on PWS research such as the Foundation for Prader-Willi Research and PWSA USA
• Continue awareness and advocacy initiatives, including the rollout of the “Still Hungry for a Cure” brand to PWSA-USA and other organizations worldwide.
• Continue to support families in Colorado through social gatherings, informational speakers, Colorado group home, etc.