The first couple days, months, and years into a PWS diagnosis can be scary and overwhelming. Navigating a PWS diagnosis can come with a lot of fast and unpredictable changes. Our Family Support team is always here to offer HELP & HOPE. From your first days in the NICU to settling into life at home, sending your child to their first day of school to preparing for high school and beyond, to helping usher your child into adulthood and navigating guardianship, we are responding to your evolving challenges and needs 24 hours a day, 7 days a week, 365 days a year. PWSA | USA’s Family Support team provides the encouragement, support, and resources individuals and families need to thrive in the face of a rare genetic condition.
How We Can Help
A diagnosis of PWS may bring a variety of medical complexities, behavioral issues, and highly specialized needs that challenge not just the individual, but the entire family. It is important to know you are NOT alone! Our Family Support team can be found in action where you need them the most. In addition to the robust resources found on our website, here are some ways we support you and your loved one:
- Early intervention
- New diagnosis education
- NICU support
- Feeding resources and nutrition education
- Applying for Medicaid, Services, SSI
- Family Mentoring Program
- Emotional support
- Access to 24-hour crisis counselor
- School transitions
- Trainings for caregivers, educators, and residential providers
- Behavior education and support
- IEP support
- Understanding food security
- Programs for social skills building
- Transition from school to adult support
- Navigating guardianship
- Medical and legal support
- Tools for advocacy and awareness
If you are in need of support in any of these areas, please don’t hesitate to reach out. You can email us at info@pwsausa.org and your inquiry will be directed to the appropriate person. If you are in crisis and need immediate support, please call our crisis line at (941) 312-0400.
Family Support Campaign
Our Family Support Campaign begins April 1st and runs through May 31, 2024. You can support PWSA | USA in the multiple ways we give HELP & HOPE to our families. Simply make a donation to our Family Support Campaign – any amount is an investment with a priceless return! As demand for our services continues to grow, PWSA | USA relies on the generosity of community members like you to make our work possible.
Your gift to the Family Support Campaign means our vital resources will be available in the future for your family and those who have yet to receive their life-changing diagnosis. Together, we can continue to strengthen and grow, and fulfill PWSA | USA’s mission of enhancing the quality of life and empowering those affected by Prader-Willi syndrome.
We are grateful to be here to support families and their loved ones 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.
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.
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.
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.
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.