We can’t overstate this enough – thank you. We are grateful to every family, individual, caregiver, professional, researcher, and supporter who took time out of your busy lives, traveled from near and far, and made the United in Hope International PWS Conference in Phoenix the most unforgettable gathering we’ve ever experienced.
This was a historic milestone for our community. It was the first time all three major PWS organizations, the International Prader-Willi Syndrome Organisation (IPWSO), the Foundation for Prader-Willi Research (FPWR), and Prader-Willi Syndrome Association | USA (PWSA | USA), joined forces to host one united global gathering. Together, we celebrated a record turnout with 1,330 attendees, which is more than any conference in our history!
Here’s a look at what our week together looked like, by the numbers:
- – Clinical & Scientific Program: 413 attendees
- – Professional Providers Program: 161 attendees
- – Adults with PWS Program (first-ever!): 59 attendees
- – Family Program: 823 attendees
- – PWS and Sibling Camps: 187 attendees
- – Night Under the Stars Gala: 73 attendees
- – 50th Birthday Party: 720 attendees
- – International Attendees: 146
Nearly two years of planning, teamwork, and passion led to this memorable week. You could see and feel all the hard work pay off in every handshake, every hug, every conversation, and every breakout session. Many dedicated people contributed to making this gathering as special as it was – from our committed teams to our amazing volunteers and generous sponsors.
It was an honor to work side by side with IPWSO and FPWR. Together, our teams brought their ideas, energy, and dedication to every detail, ensuring the entire week offered opportunities to learn, connect, and feel supported. We especially want to thank Tony Holland and Marguerite Hughes for their many years of service to the global PWS community and for everything they brought to this conference. We look forward to future collaboration opportunities with IPWSO and FPWR!
Celebrating PWSA | USA’s Milestone Birthday
One of the highlights of the week was our 50th Birthday Party – an unforgettable night at the Arizona Grand Resort & Spa’s Oasis Waterpark. This year, 2025, is PWSA | USA’s 50th Anniversary, and we loved getting the opportunity to celebrate with our PWS community. During the event, attendees zoomed down water slides, relaxed in the wave pool and lazy river, and danced the night away with our DJ, who kept everyone moving. The evening ended in spectacular fashion with a Drone Show. A huge thank you to Jeff and Stacy Ward for bringing this iconic sky show to life, and to Soleno Therapeutics for sponsoring this fun evening for our families.
Conference Reflections
Here are just a few reflections from attendees about what made this conference so meaningful:
“Thank you for organizing this. The energy around was so hopeful, from other families, doctors, and sponsors. It can feel so lonely when a diagnosis is delivered and is thought about purely clinically. Thank you for the hope.”
“It was a great family experience. We have more tools and knowledge of PWS that definitely will help us to improve our management with our PWS son.”
“It was such an amazing conference. It was very informative, and the breakout sessions offered great topics. It felt like a big family reunion, getting to see and catch up with our PWS families. Thank you for everything!!”
“The highlight of my experience was the feeling of Unity and Hope. We all know the struggles and worries – but I left with a real feeling of all the possibilities.”
And from our own PWSA team:
“Of all the events I’ve had the privilege of planning over the past 20 years, this one has truly been my favorite. Experiencing it not only as an employee of PWSA, but also as a mom to a child living with PWS, made it especially meaningful. This conference takes more than a year to plan, and every single hour, every single minute is absolutely worth it. Meeting so many of you in person was an incredible joy, and your stories, strength, and hope continue to inspire me. I can’t wait to see you all again in 2027 at our next United in Hope conference. Let the planning begin!”
– Angela Frazier, Events Specialist
“Being at the International PWS Conference in Arizona was nothing short of inspiring. Surrounded by hundreds of families, clinicians, researchers, and advocates, the energy was hopeful, determined, and deeply connected. There’s something incredibly powerful about being in a space where every person “gets it”—where shared experiences form an instant bond and where every conversation, session, and hug reminds you that you’re not alone on this journey. What I enjoyed most about the conference was the opportunity to witness our community come alive in person. From the powerful keynote moments to the quiet connections in hallways, it was a reminder of the strength we carry, individually and collectively. It left me feeling recharged, re-committed, and incredibly proud to be part of this community!”
– Dorothea Lantz, Director of Community Engagement
“The International PWS Conference was a beautiful reminder of how fortunate we are to have so many incredible clinicians, scientists, and professional providers dedicated to improving the lives of everyone affected by Prader-Willi syndrome. One of my favorite parts of every conference is finally getting to hug those I’ve connected with over social media or on the phone. There’s something so special about turning those virtual relationships into real life moments. And of course, seeing Justice light up while connecting with people who truly get her fills my heart. It’s moments like those that remind me exactly why we do what we do at PWSA | USA.”
– Kristi Rickenbach, Parent Support Coordinator
“As a new member of the PWSA | USA staff, this conference left me feeling so many feels – feeling seen by people who really understand life with PWS, awed by the speakers and content they were able to bring to us all, proud to be part of this amazing team, and inspired to want to do more. From the large group of PWS adults in attendance (including my son) to the parents at their first conference with their new babies and toddlers, there was something for everyone. The strength of the PWS community was on display – from young parents to not-so-young, from researchers and physicians to professional providers/caregivers, from our pharma partners to all of the vendors – we are strong and I am so proud to be part of it all.”
– Elaine Towle, Advocacy Specialist
“The 2025 United in Hope Conference has been incredibly impactful and beneficial for both me and my son. I got to enjoy attending sessions and learning about all the new perks, research, and techniques. I loved that the sessions were up to date and covered the very latest developments in the PWS world, while my son had a wonderful time at the camp. I feel so grateful to have been able to participate, knowing he was well cared for — it made the experience even more rewarding! It was also amazing to finally meet so many families- who get it- in person after talking to them online and over the phone for years.”
– Sarah Kasaby, Information and Referral Specialist
“Attending the 2025 United in Hope Conference was an unforgettable and deeply moving experience. This unique gathering of three organizations brought together families, individuals with Prader-Willi syndrome, scientists, and professional providers—forming a truly united community. Surrounded by people who share a common purpose and a shared vision for a better future, I felt a profound sense of hope and inspiration. The in-person connections, heartfelt conversations, and shared experiences reminded me how much strength exists in our global PWS network. Through collaboration, we are not only gaining knowledge, but also building knowledge—together. Witnessing the progress we’ve made and the potential that lies ahead filled me with renewed energy and clarity. This conference reaffirmed that we are stronger when we stand together, working toward a future of greater understanding, support, and opportunity for all individuals with PWS.”
– Lynn Garrick, Medical/Research Coordinator
“Being at conference was of course an incredible experience. Bringing my family to conference was even better! I love that both of my girls made friends at camp and had a wonderful time. My husband was grateful to take it all in and join the Dad’s session. This was our first experience being in the PWS community together, and it was a success for all of us!”
– Anne Fricke, Marketing/Communications Coordinator
“This community is incredibly special. As someone who joined as an outsider, I always feel so welcomed by families, and this conference solidified that even more. I’m grateful to have had the chance to play a part in planning it. It was also heartwarming to see my mom (who volunteered at the conference) be embraced by everyone, and even more meaningful knowing she learned a lot about PWS in the process. From my perspective – witnessing the ‘I haven’t seen you in so long’ hugs, the in-depth conversations, and the new connections made – this conference did exactly what it set out to do: bring the PWS community together like never before and offer a true sense of unity and hope.”
– Carrie Ilijevich, Marketing/Communications Director
Relive the Memories
- – Browse our Conference Photo Gallery and relive all the special moments from our time in Phoenix.
- – Catch up on Family Program Main Ballroom sessions on our Conference YouTube playlist.
- – Read the 2025 Clinical & Scientific Abstract Booklet for the latest research shared at the conference.
- – Listen to additional recorded sessions on the PWS United Podcast. The first episode featuring Nutritionist Michael Tan is now live [listen here] – stay tuned for another session episode coming soon!
A Final Thank You
From all of us at PWSA | USA, thank you for being part of this unforgettable time together. We are truly united in hope, and we can’t wait to see you again soon.
To our amazing volunteers: You stepped up in countless ways – helping in the camps, greeting families, guiding attendees, and more. You kept everything running smoothly with warmth and care.
And to our sponsors: Your generous support made this historic gathering possible. Thank you.
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.