Prader-Willi California Foundation (PWCF) was established in 1979 as a non-profit, 501(c)(3) charitable organization by parents of persons with Prader-Willi syndrome. PWCF is an affiliate member of the national Prader-Willi Syndrome Association (USA). Our founders’ aspirations were to improve the educational and residential quality of life of individuals born with the syndrome. Today, PWCF is over 700 members strong.
Individuals with Prader-Willi syndrome should have the opportunity to pursue their hopes and dreams to the full extent of their talents and capabilities. The success of people with Prader-Willi syndrome depends greatly upon the knowledge and support of the community around them. The Prader-Willi California Foundation provides individuals with PWS, their families and professionals with a state network of information, advocacy and support services.
A Full Life Without Limits
How We Help
Prader-Willi California Foundation provides the following comprehensive range of services:
Educational Activities—Programs benefit children, parents, physicians, health care professionals, teachers, Regional Center personnel, and vocational and residential service providers.
Annual Conference—Children with PWS and their siblings, parents, and community members gain valuable knowledge and support.
Summer Camp Scholarships—Financial assistance helps children attend an exclusive PWS camp (the only one in California) at a specialized, medically monitored mountain facility.
School Trainings—In-service trainings help those contributing to a child’s IEP (Individual Educational Plan) access important PWS information, production of a DVD titled Understanding the Student with Prader-Willi Syndrome, Strategies for Success, which is distributed locally, nationally, and internationally. Without these informative materials, children with PWS are simply not able to secure the appropriate medical, therapeutic, and educational services they need.
Multidisciplinary Clinics—PWCF funds healthcare specialists within clinic and hospital settings who provide state-of-the-art treatment to children with PWS.
Professional Staff Trainings—Teaching provides individualized training, technical assistance, and workshops to improve the lives of children and adults with PWS.
Family Support—Group meetings, on-line support services, parent mentors, and 24 hour a day crisis phone lines are provided.
Individualized Advocacy Services—1:1 assistance helps families obtain Regional Center services and various medical, therapeutic, educational, and vocational services necessary to improve the health and welfare of a child with PWS.
Public Awareness—Community education is provided through PWCF’s website, quarterly newsletters, public service announcements, press releases, radio interviews, awareness booths and Jumbotron messaging at sporting events, and walk-a-thon/picnics. PWCF writes and produces brochures, articles, and educational DVDs.
Residential and Worksite Support—Interest free loans and grants are provided to residential facilities and vocational work sites that support persons with PWS. Exercise equipment and furniture grants have been given to group homes serving those with PWS. Production of a Residential Services Staff Training DVD and study guide to assist residential facilities and families.
PWS Research—PWCF supports state and national research by working with local universities, teaching hospitals, researchers, and scientists to help recruit research subjects and disseminate research materials to families.
PWCF maintains online and in-person Support Groups for parents and professionals.
PWSA (USA) maintains several Facebook support groups.