2023 National Convention
THANK YOU to everyone who attended PWSA | USA’s 2023 National Convention, and to those who presented, volunteered, and sponsored this unforgettable event!
We sincerely appreciate you making the trip to Orlando and participating in our Medical and Scientific Conference, Professional Providers Conference, Family Conference, PWS Camps, FDA Externally-Led Patient-Focused Drug Development Meeting, and Hope United Gala. We are inspired by our community’s unwavering commitment to improving the lives of our loved ones.
The impact of this Convention will extend far beyond the walls of our session rooms. It will ripple through our homes, schools, workplaces, and communities, influencing change and fostering a more inclusive society. Together, we are United in Hope!
What Attendees are Saying About PWSA | USA's 2023 National Convention
We are so grateful for the outstanding Conference! All who participated were impressed by the thoughtful program, the informative sessions, and the special bond created among us all. Importantly, the powerful interactions did not stop when the meetings were over: the event gave rise to new collaborations united in the Hope to bring safe and effective drugs to those with PWS!
The event was a tremendous success, and having the opportunity to attend the Gala was a real honor. Listening to the accounts of those with PWS and their families was powerful and moving, but equally powerful was seeing the PWS community come together so warmly at the Gala. I briefly saw the kids’ Gala set-up before I came over, and it looked like the kids were going to have an amazing time as well.
I have attended numerous medical conferences, family conferences, EL-PFDD meetings, and galas across a vast range of therapeutic areas (although never all in the same week), and this surpassed them all. The details of the conference were also very inclusive and accessible, including the clinical trial panel, siblings panel, the siblings camp, Dad’s Den, and ALS translator. Numerous families that I met were so thankful for the opportunity to be connected with their “second family.”
Congratulations on an amazing meeting! The sessions were both informative and impactful. I honestly cannot think of anything that should have been thought of that was not addressed. The Gala was outstanding and so much fun! Thank you for a wonderful meeting.
Several 2023 National Convention Family Conference Session Recordings are Now Available for Viewing!
Don't Forget to Participate in our 37th National Convention Surveys
For those who attended, we encourage you to click the buttons below to participate in our general Convention and PWS Camp surveys (if you haven’t done so already). Your feedback will help us prepare for future Conventions!
PWS Word Cloud
During the EL-PFDD meeting, attendees were asked to share what significant symptoms of PWS impact their lives aside from hyperphagia. The below word cloud was created with the answers provided. Click the image to view a larger version of this word cloud. We appreciate everyone who participated in this exercise, which will be included in our Voice of the Patient Report.
Thank You to Our Sponsors!
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.