contributed by Stacy Ward, CEO of PWSA | USA
I have attended many conferences throughout my career, but there is something different about a PWS convention.
The education is outstanding. The speakers are world-class. The research is exciting. The opportunities to learn from experts, ask questions, and gain practical tools are invaluable. But if I’m being honest, that’s not what stays with me long after the convention ends.
What stays with me are the people.
It’s the parent who arrives feeling overwhelmed and leaves with a phone full of new friends who truly understand their family’s journey. It’s the young adult with PWS who discovers that there are hundreds of others just like them and realizes they are part of something much bigger than themselves. It’s the sibling who finally finds someone who understands what it means to grow up in a family shaped by PWS. It’s the clinician who connects with colleagues from across the country and leaves energized with new ideas, partnerships, and hope. Our convention was created to bring together individuals with PWS, families, clinicians, researchers, and providers in one place because we know that progress happens faster when we learn from one another and stand together as a community.
When a family receives a diagnosis, they often feel isolated. PWS is rare, and many families spend years feeling like no one really understands what daily life looks like. Then they walk into convention and suddenly they are surrounded by people who “get it.”
No explanations required.
No awkward conversations.
Just understanding.
I have watched parents who arrive at a conference knowing no one, then leave with lifelong friendships. I have seen tears of relief when families realize they are not alone. I have seen children and adults with PWS find their people. There is a sense of belonging that is difficult to put into words, but anyone who has experienced it knows exactly what I mean.
Of course, convention is also where knowledge comes to life. Families have the opportunity to hear directly from leading experts about medical care, research, nutrition, behavior, mental health, advocacy, transition planning, and the many topics that impact life with PWS. Professionals gather to share best practices, discuss emerging research, and work together to improve outcomes for individuals with PWS. The exchange of information and expertise helps move our entire community forward.
But what makes this gathering so special is that the learning doesn’t stop when the presentation ends.
Some of the most important conversations happen over coffee, in the hallways between sessions, at dinner tables, during social events, and while cheering on new friends at camp activities. The lessons shared through lived experience are every bit as valuable as those shared from a podium.
For medical professionals, convention offers something equally powerful. Caring for individuals with PWS often means working within a small community of specialists. At convention, physicians, therapists, researchers, educators, and support providers have the opportunity to connect with others who share their commitment to improving the lives of people with PWS. New collaborations begin. Research partnerships are formed. Best practices are shared. Together, we build a stronger network of professionals dedicated to advancing care and outcomes.
Our convention is intentionally designed so there is truly something for everyone, including families, adults with PWS, medical and scientific professionals, providers, siblings, and dedicated camp experiences for youth and adults with PWS. Every attendee has opportunities to learn, connect, and grow.
I often talk about our mission of helping individuals with PWS live healthy and fulfilling lives. Convention is one of the clearest examples of that mission in action. For a few days, we come together from different states, countries, professions, and experiences, united by one goal: creating a better future for individuals with PWS and their families.
The knowledge gained at convention matters.
The research matters.
The education matters.
But the community may matter most of all.
Because hope grows when it is shared.
And there is nothing quite like standing in a room full of people who remind you that you are not walking this journey alone.
That is why we gather.
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.