We are excited to come together again in-person for the 37th PWSA | USA National Convention, June 21-24, 2023 in Orlando, FL! Leading up to this much-anticipated event, members of our PWS community are sharing their Convention memories and why it’s beneficial for others to attend! Below, PWS parent Julie Casey gives details about her Convention experiences with her son Ryan and advice for other families, especially those planning to attend Convention for the first time.
———————————————————————————————————
When did Ryan receive his PWS diagnosis?
We were lucky in that Ryan was diagnosed shortly after birth. Like most PWS babies, he was weak and floppy after delivery (via c-section) and was transferred to the NICU the day after he was born. From there, they started doing assorted tests trying to figure out what was “wrong” with him. This led to a diagnosis when he was about 10 days old, which meant we had his diagnosis when he came home a couple weeks later. It is all kind of a blur, but I reached out to PWSA | USA and Prader-Willi California Foundation (PWCF) within days of getting the diagnosis and started preparing ourselves for life with PWS.
Have you attended an in-person PWSA | USA Convention before, and if so, when?
I’ve been to the Convention in 2007, 2011, 2013, 2015, 2017, and 2019. I’ve also attended the Chapter Leaders meetings in 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2019, the Parent Mentor meeting (separate from Convention), and the Volunteer Summit in 2022.
What is one of the most impactful/memorable experiences you’ve had at a PWSA | USA National Convention?
To me the most impactful thing about Convention is being surrounded but such a HUGE group of people who all “get it.” It’s powerful. And it’s such a relief not to have to explain all the needs and behaviors of PWS, since everyone, even if their journey is different, understands. It’s also so much fun to reconnect and hang out with all the amazing fellow parents I’ve met through the years. The content and access to ALL the top experts is invaluable.
What are you looking forward to at the 2023 National Convention?
Being back in person!!! Getting to see all my friends, and of course, hear the speakers.
Do you have any advice for new families who will be attending for the first time?
For parents with babies/toddlers, I think it can be overwhelming because you’re still adjusting to PWS and now you’re seeing a whole range of individuals with the syndrome. You also hear so much information, often about worse case scenarios. While the information is important to know, it can be hard to hear. So, with all of that in mind, my advice would be to stick to the sessions that are recommended for your child’s age, and connect with your parent mentor or another experienced parent so you have someone to give you extra moral support and reassurance.
Why do you believe it’s important for the PWS community to gather in-person, especially for a PWSA | USA National Convention?
In today’s world where we are increasingly relying on virtual connections, it’s nice to be face-to-face. The power of gathering is undeniable. When you’re surrounded by that many people who understand PWS, you feel the strength of the community – you feel supported – you feel hope – you understand you are not alone. And on top of that, you get AMAZING speakers on so many topics; armed with knowledge fuels that sense of power.
Has Ryan been to a past Convention, and if so, what are some of his favorite memories?
Ryan has been with me (or us, sometimes my husband goes too) for all that I have attended, but didn’t go to the kids program for a couple of them. However, he does enjoy the program, and is looking forward to the Gala for the kids/adults with PWS.
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.