Everyone connected to Prader-Willi syndrome can remember a moment when support, information, encouragement, or simply knowing someone understood made all the difference.
Maybe it was a phone call after diagnosis.
A conversation with another parent.
An advocate who spoke up.
A resource shared at just the right moment.
A reminder that someone else had walked this road before.
Those moments matter because they remind us who we are.
We are a community that shows up for one another. We celebrate milestones together. We advocate together. We learn from one another. We support one another through uncertainty, challenges, and victories. And when a family hears the words “Prader-Willi syndrome” for the very first time, together we ensure they don’t have to navigate what comes next alone. That is what Hope in Action looks like.
This year, our PWS community continued to put hope into action in meaningful ways. Together, we connected newly diagnosed families with Parent Mentors, strengthened support and educational resources, brought our largest-ever delegation of advocates to Washington, D.C., continued advancing newborn screening efforts, expanded opportunities for individuals with PWS to develop leadership and self-advocacy skills, brought new moms and experienced moms together to help strengthen connections, worked to increase education and awareness among healthcare professionals and communities across the country, and so much more.
Every parent, grandparent, caregiver, sibling, self-advocate, volunteer, donor, healthcare professional, and supporter who chooses to be part of this community helps make that possible.
As we look ahead, more families will receive a diagnosis. More individuals with PWS will seek opportunities to learn, lead, and advocate. More caregivers will need guidance. More professionals will need education. And more people will discover the life-changing power of finding a community that understands. Together, we can continue making sure they find that support when they need it most. Your Angel Drive gift helps ensure that support, advocacy, education, and connection remain available for everyone whose life is touched by PWS.
Thank you for being part of our PWS community. Thank you for caring. Thank you for helping turn hope into action every day. And thank you for helping ensure that no family walks this journey alone.
Join Our 2026 Angel Drive
By giving your Gift of Hope, you’ll help make our 2027 plans a reality and ensure PWSA | USA remains a lifeline for families, offering critical support services, advancing research, and amplifying advocacy and awareness efforts across the country.
Your tax-deductible gift helps provide hope 24/7/365 today, tomorrow, and for generations to come.
Thank you for walking beside us and for your steadfast commitment to the PWS community. Together, we are united in hope.
Make Your Smartest Gift Before Year-End
There are more ways than ever to make a meaningful, tax-wise contribution:
- Qualified Charitable Distributions (QCDs): Are you 70½ or older? You can give directly from your IRA tax-free.
- Donor-Advised Funds (DAFs): Recommend a grant and amplify your impact.
- Stock Gifts: Avoid capital gains and support a cause that grows in value.
- Name PWSA | USA as a beneficiary of your retirement plan, life insurance, or investment account.
Every dollar helps families today, and brings us closer to breakthroughs tomorrow.
WATCH: Hope in Action – Hear from Our PWS Community
In our 2026 Angel Drive Campaign kick-off video, family members, professionals, and individuals with PWS share the ways PWSA | USA has touched their lives, from the guidance they found after a diagnosis to the friendships that have lasted for years.
As parent Tammie Penta shares, we continue to hit new milestones as a community, but there is still more work to be done. That is what the Angel Drive is all about: pushing the needle forward for the best care, support, services, connection, and resources for every family and individual affected by PWS.
Watch, share, and join us in putting hope into action.
Bring nearly 1,000 community members together for our most anticipated biennial event, a chance to connect, learn, celebrate milestones, and strengthen the bonds that make our community so powerful.
With new faces in office this election year, introduce lawmakers to the PWS community and our needs through crucial advocacy work at both the national and state levels.
Sustain our Advocacy Ambassadors Program, which empowers family members nationwide to speak up for the entire PWS community, and launch a NEW advocacy training program that gives individuals with PWS the skills and confidence to raise their own voices.
Grow the programs, initiatives, and resources that are lifesaving for families and loved ones affected by PWS, from the first days after diagnosis through every stage of life.
Support PWS medical and educational research that deepens understanding and leads to better care and brighter futures for individuals living with PWS.
Champion PWS equity work so underrepresented families receive an earlier diagnosis, connect to a wider network of support and resources, and see themselves reflected in our community.
Grow the reach of the PWS United Podcast, a global resource covering a wide range of topics critical to understanding and supporting the PWS community.
NEW in 2027: Launch a major initiative to strengthen the network of specialists who care for individuals with PWS. Details coming soon!
Support PWSA | USA
PWSA | USA's Hope in Action Video Series
Hope in Action, our video series sharing real stories of resilience, hope, and community from families impacted by Prader-Willi syndrome, returns for a third year. Since its debut in our 2024 Angel Drive campaign, each story has highlighted the many ways PWSA | USA is making a difference, from school success and crisis support to advocacy and beyond, illustrating the strength of our families and the heart of our mission.
In this installment, Carol Hearn reflects on the early days of her son David’s diagnosis more than 30 years ago, the limited guidance families once received, and how PWSA | USA became a lifeline of trusted information, support, and connection. Now, more than 50 years after our organization’s founding, Carol sees just how far the PWS community has come and how much brighter the future is for newly diagnosed families today. Her story is a powerful reminder that progress is built one family, one advocate, and one generation at a time.
PWS Community, Something Big is Coming!
For decades, our community has come together to support one another, advocate for change, and keep moving forward. On Tuesday, December 1 (Giving Tuesday) at 12:00 PM ET / 9:00 AM PT, we’re sharing a big step in that journey. Join us on PWSA | USA’s YouTube channel for a very special announcement that will change the future of care for families and individuals affected by PWS. Mark your calendar and set a reminder! We’ll share the livestream link soon.
SHARE YOUR HOPE!
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.