Prader-Willi California Foundation

“The organization provides a copy of the form 990 to all members of its governing body before filing the form. It is the policy of the Prader-Willi California Foundation that tax Form 990 shall be reviewed by the Board of Directors prior to submitting the Form to the IRS in the following manner: Prader-Willi California Foundation's Finance Committee initially reviews the Form 990. Questions and/or any issues regarding clarification are asked of the Accounting Firm that prepared the Form. As soon as the Finance Committee believes the Form 990 is ready to be presented to the Board of Directors, it provides a copy to each Board member via mail or PDF format. The Board of Directors, as a whole, discusses the Form 990 and, by majority vote, returns it to the Accounting Firm with additional questions or clarification, or authorizes that it be submitted to the IRS. If changes are made after clarifications, they will review and then forward as outlined.”

“DID THE ORGANIZATION HAVE WRITTEN CONFLICT OF INTEREST POLICY? At the first Annual meeting of the Board of Directors, the Executive Director provides the overview of the Foundation's Conflict of Interest Policy and distributes the Conflict of Interest form to each board member. The forms are signed by each member and collected by the Director.”

“How does the organization make its governing documents, conflict of interest policy, and financial statements available to the public? Upon request and these items are also posted on our website.”

“Did the process for determing compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision? The organization surveys salaries for executive director in comparable size organizations. The board reviews the various salaries and makes a determination as to the level of salary for the executive director on an annual basis.”

“Mission statement: individuals with prader-willi syndrome (pws) should have the opportunity to pursue their hopes and dreams to the full extent of their talents and capabilities. The success of people with pws depends greatly upon the knowledge and support of the community around them. The organization provides individuals with pws, their families, and professionals with a state network of information, advocacy and support services.”

“Educational Programs: PWCF held our Annual State Conference and provided critical education to parents, teachers, physicians, and other professional care providers. A concurrent Youth & Adult Conference served children and adults with PWS and their siblings. We produced a PWS Behavior Management Training session and a School IEP Education Training Program, provided dozens of educational in-service trainings to school staff, and provided dozens of Residential Staff Training Sessions to group home providers throughout California. PWCF produced four quarterly newsletters that contained educational articles, research studies and subject recruitment opportunities, support opportunities, and other valuable information. We distributed educational DVDs, books, and other educational materials. We distributed to families information about research participation opportunities.”

“Support & Advocacy Programs: PWCFs Prader-Willi Syndrome Camp is the only medically specialized camp in the State of California that exclusively serves persons with PWS. This year we supported two camps, served 84 campers ranging in age from 8 65 years, provided critical respite to each camper's family members or care providers, and granted over $13,000 in camp scholarships. PWCF Supported three PWS Clinics throughout the state treating hundreds of children and adults with PWS. PWCF Sponsored a Family Fun Day at a specialized gym for children with disabilities while supporting families with a network to feel less isolated as they had fun. PWCF facilitated support groups, wrote letters of advocacy, and accompanied parents and family members to school meetings, regional center meetings, and hearings.”