Our Mission
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.
How We Help
Prader-Willi California Foundation provides the following comprehensive range of services:
Educational Activities—Programs providing training sessions that benefit children and adults with PWS, parents, physicians, health care professionals, teachers, Regional Center personnel, and vocational and residential service providers.
Annual Conference—Parents, extended family, and professionals who serve persons with PWS gain valuable knowledge and support. Simultaneous Youth & Adult Program serves persons with PWS and their siblings.
Summer Camp Scholarships—Financial assistance helps PWCF members attend our PWS-exclusive camp (the only two in California), both are specialized, medically-monitored facility.
School Trainings—In-service trainings help those contributing to a child’s IEP (Individual Educational Plan) access important PWS information. PWCF’s DVD Understanding the Student with Prader-Willi Syndrome, Strategies for Success, is distributed locally, nationally, and internationally. Without these informative materials, persons with PWS are often not able to receive the appropriate educational services they need.
Multidisciplinary Clinics—PWCF funds healthcare specialists within clinic and hospital settings who provide state-of-the-art treatment to children and adults 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 24/7 PWS-related medical crisis lines are provided.
Individualized Advocacy Services—1:1 assistance helps families obtain Regional Center services and various other medical, therapeutic, educational, and vocational services necessary to improve the health and welfare of their child or adult 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 Work Site Support—Staff training provided to residential , day program, and vocational work site staff who support persons with PWS. Loans and grants available to residential providers; exercise equipment and furniture grants have been given to group homes serving those with PWS. PWCF’s Residential Staff Training DVD and study guide provide valuable support to residential facilities and families.
PWS Research—PWCF supports state, national, and international research by working with local universities, teaching hospitals, researchers, and scientists to help recruit research subjects and disseminate research materials to families.
Contact Information
Prader-Willi California Foundation
www.PWCF.org
Facebook
info@pwcf.org
1855 First Ave, Suite 201
San Diego, CA 92101
Emily Dame, Executive Director
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.