“This event would not have been possible without our sponsors, Soleno Therapeutics, Harmony Biosciences, and Acadia Pharmaceuticals. They recognize and see the needed value for residential providers to have opportunities to invest in professional development for their staff, learn from experts, and bond with fellow provider agencies.” – Stacy Ward, MS, BCBA, PWSA | USA CEO.
Residential providers are an essential part of the PWS community. They are the caregivers when our loved ones move into registered living facilities, are integral to their health and well-being, and help our loved ones live independently from family. It is critical that these providers have access to the latest information in caring for someone with PWS. To meet this need, PWSA | USA was excited to host the Residential Providers Conference, Empowerment Heroes: Reveal Your Superpowers.
This conference was held August 18-20, 2024, both virtually via zoom and in-person in Savannah, GA and offered a variety of lectures and workshops where more than 100 professionals from around the country met to share their knowledge and experiences. The goal of this event was to enhance the care provided to individuals and develop new methods of support on a range of topics like research, relationships, technology, the role of therapies, diagnostic instruments in behavior management, autonomy, aging, and more.
Participants attended a variety of sessions including:
- “Together We Thrive: Working Collaboratively with Individuals and Families to Decrease Challenging Behaviors” led by Patrice Carroll, LICSW and Brittni Kliment, M. Ed from Latham Centers;
- “Active Aging Solutions: Integrating Exercise into Daily Life for Older Adults” with Danielle Hughes, DPT, DD Homes;
- “Optimal Health: Trends and Insights in Diet and Nutrition” with Kim Tula, MS, CSW, from PWSA | USA;
- “Hospital-Based Nutrition and Food Security Strategies for PWS” with Marguerite Rupnow, MBA;
- “Friendship and Beyond: Navigating Relationships and Sexuality in PWS” with Patrice Carroll, LICSW, Latham Centers;
- Round table discussions and more.
We are grateful and inspired by the people who choose to step in and care for our loved ones with PWS when they move into residential facilities. Your knowledge and dedication help our loved ones live independent, healthy, and happy lives. Thank you for taking the time to learn more about PWS and how to help our loved ones thrive!
Here’s what conference attendees had to say about their experience:
“There is nothing more inspiring than spending time with people who are so committed to improving the lives of people with PWS! The learning, sharing, brainstorming, and connecting was a priceless experience, and I can’t wait to do it again! Thank you PWSA | USA for highlighting the importance and dedication of professional providers.” – Patrice Carroll, LICSW, Latham Centers
“It’s always a pleasure to connect with fellow professionals who understand both the joys and challenges of working with individuals with Prader-Willi Syndrome. Thank you, PWSA | USA, for providing the platform for us to share, learn, and brainstorm together. Even after years of attending these conferences, I leave each one energized and inspired by the incredible work of our passionate provider community. Thank you to everyone who attended and shared—you truly are superheroes!” – Marguerite Rupnow, MBA, Board of Directors Chair at PWSA | USA
“It was an amazing two days full of learning and collaboration with providers from across the nation who all share a dedication for providing informed, safe and compassionate care to those living with PWS. Many ideas were shared, and it was nice to learn from everyone. A wonderful conference for the national group and, hopefully a recurring event!” – Lynn Garrick, MSN, RN, PWSA | USA
“It is such an honor to be part of a group of committed and passionate people who have dedicated their careers to bettering the lives of people with PWS! I was thrilled to be a part of a conference that focused so much on the essential roles that we as providers play in the lives of people of PWS!” – Brittni Kliment, M. Ed from Latham Centers
“Such an empowering experience to be together with so many people all working for the same mission – to improve the quality of lives and meet the needs of the PWS community. The sharing of experiences was invaluable.” – Kim Tula, MS, CSW, PWSA | USA
“Rejuvenating! Being in a space with others that share the same hopes, dreams, goals, and passion for the PWS community is inspiring. Knowledge is power and we’re all leaving with knowledge to fuel our superpowers! Until next time!” – Nicole Tingley, Director at DD Homes
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.