1. To raise and expand awareness about this challenging to genetic disorder; 2. To provide holistic and comprehensive family in crisis support services; 3. To facilitate research that saves and improves lives, 4. To provide education to those serving or working with the PWS community, such as medical professionals, educational professionals, and residential providers, and 5. To advocate for the needs of the PWS community.

1. We increase awareness through multiple channels, including broad – base communications, posting voluminous information on the Internet, and the utilization of social media. Further, we hold the largest PWS conferences in the world to increase awareness. 2. In the area of family in crisis support, our organization and employees dedicated professionals that work with individuals with PWS and their families and key third parties such as caregivers and educators. 3. Increasing the rate and number of positive research outcomes is supported through gathering of individuals for clinical trials and raising funds that are then utilized in targeted research activities. 4. Strategies for education include one – on – one instruction, group training sessions such as in schools, the creation and distribution of over 100 specialized handouts and publications, and including educational information in a printed newsletter and on specialized blogs. 5. Advocacy strategies fall into two areas, one being advocating for an individual or family directly, and the other being informing rule makers and legislators of the needs created by this just genetic disorder.

The capabilities of the Prader – Willi Syndrome Association (USA) are extensive, befitting a national organization with 32 state and regional chapters. Resources include a staff of 16 trained professionals, the organization's possessive Board of Directors and eight committees, and specialized advisory boards including the Scientific Advisory Board, Clinical Advisory Board, Professional Providers Advisory Board, and Residential Providers Advisory Board. The work of staff and volunteers is leveraged by an approximately $1. 8 million budget and the efforts of volunteers at the state chapter and grass-roots levels.

Service and progress indicators include number of families with newly diagnosed children assisted, total number of service activities per month and per year, the longitudinal support of a person with PWS over years as they go through different age periods in their lifecycle, are diversity/regularity/frequency of contact with supporters, the number of donor responses to an outreach, the number of respondents to an organizational survey, the number of participants in clinical trials, our total number of volunteers and volume of volunteer time invested in our mission, the donor conversion rate, the donor retention rate, the total number of new volunteers in a year, and more.

Prader-Willi Syndrome Association (USA) has increased its positive impacts by employing to specialists to work with parents and the extended family of newly diagnosed children. Adding these staff to the pre-existing members of the Family Support staff team allowed for more than 2100 service activities to be delivered in the past year, including the very important assistance to over 150 families with new newly diagnosed children. The number of cutting – edge informational publications continues to expand, as do the resources of the organization's website and postings on social media. Our biennial national convention for Prader-Willi syndrome has four separate specialized conferences taking place under the one convention umbrella. Further, the website will be seeing additional improvements this winter and next spring, and the expansion of providing critical information through text messaging to smart phones is being developed.