“If you can’t feed a hundred people, then just feed one.”
― Mother Teresa
By supporting PWSA | USA, you can help more than one.
On August 17, 2024, we are honoring National Nonprofit Day. As a national nonprofit organization about to celebrate 50 years, PWSA | USA understands the importance of serving the community through family support, education, advocacy, and research. We are proud of the work we have done and continue to do to empower and support individuals living with PWS and their families.
Nonprofits are essential to many aspects of our society around the world. They seek to better their communities and provide necessary support to those who are underprivileged, at risk, and whose needs are not being met. Nonprofits provide education, support, resources, legal counsel, meal programs, and more. National Nonprofit Day celebrates these organizations and those who help them thrive through donations of their time, energy, and financial support.
Nonprofits not only support members of their community, they also contribute greatly to the economy. “The nonprofit sector is a significant contributor to the national economy, employing professionals such as lawyers, engineers, nurses. Following the recession in 2012, the nonprofit sector contributed up to $887.3 billion, amounting to 5.4% of the nation’s Gross Domestic Product.” (https://nationaltoday.com/national-nonprofit-day/)
PWSA | USA was established in 1975 as “Prader-Willi Syndrome Parents and Friends.” Gene and Fausta Deterling, the parents of a son with PWS, and Dr. Vanja Holm first established our organization. In 1976, we had 140 members. In 1979, we held our first annual national conference in Minneapolis, Minnesota.
We have grown a lot through the last 49 years. Our support reaches families around the country and beyond the borders of the U.S. We support families from the moment of diagnosis with emotional support and counseling, provider referrals, resources, education, and information for both families and care providers, training for schools and residential homes, advocacy in homes, schools, and all the way to D.C., working relationships with researchers, pharmaceutical and biotech companies, and PWS specialists, ongoing webinars for providers and families, and a 24 hours crisis line for any family facing the challenges of PWS.
In honor of National Nonprofit Day, we want to express our heartfelt gratitude to you, our supporters. Please continue to spread the word about PWSA | USA and what we do to help the PWS community. Share our resources with other PWS families and let them know we are here to help. Your donations and encouragement mean the world to us. Send us a thank you over social media and let the community at large know how we have helped you and your loved one with PWS.
Help support families with PWS by supporting PWSA | USA! Donate to PWSA | USA.
“The miracle is not that we do this work, but that we are happy to do it.”
—Mother Teresa
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.