Watch the expert talks and inspiring keynotes from our annual convention below!
Externally-Led Patient-Focused Drug Development Meeting
Thank you to everyone who shared their voice in-person and virtually at the FDA Externally-Led Patient-Focused Drug Development Meeting. Your time and commitment to our loved ones living with PWS is truly incredible. As for next steps, we are working to build a "Voice of the Patient Report" based off the testimonials shared both during the EL-PFDD, and those collected on our website.
DAY 1
Welcome to PWSA | USA’s 37th National Convention Family Conference (DAY 1)
- Marguerite Rupnow, MBA, National Director of Admissions and Advocacy Prader-Willi Homes of Oconomowoc
- Justice Rickenbach, living with PWS
- Dante Johnson, living with PWS
- Sophia Tweel, living with PWS
This session serves as the grand introduction to PWSA | USA's 37th National Convention, setting the tone for the Family Conference, introducing key participants, and outlining the agenda for informative and impactful sessions over the course of two days.
Caring for the Caregivers - From Brokenhearted to Belonging Using the Raregivers ™ Emotional Journey Map
In this valuable guide for caregivers, the Family Conference Keynote Address delves into effective strategies for emotional resilience, support, and coping mechanisms. Leveraging the proven Raregivers™ emotional journey map, we explore the path from heartbreak to a sense of belonging.
Genetics in PWS 101 / Standards of Care for PWS
Providing an easy-to-understand primer on PWS genetics, this session offers insights into the biological factors underpinning the condition. It also presents the current standards of care for PWS, ensuring participants are abreast of best practices in medical care.
Finding Your Community
Focused on community-building, this enlightening session offers guidance on how to establish connections, find emotional support, and engage with the wider PWS community, creating a network of peers that can provide understanding, shared experiences, and offer mutual support.
Best Practices on Gl Issues in PWS
A critical discussion on addressing gastrointestinal issues prevalent in PWS. This session offers expert advice, from prevention to management, ensuring caregivers and individuals with PWS are equipped with knowledge and techniques to handle these challenges effectively.
What’s That Orthopaedist Talking About
This session provides a clear understanding of orthopaedic terms and treatments relevant to PWS. It's an essential guide for non-medical attendees to communicate effectively with orthopaedists and understand the orthopaedic aspects of PWS care.
Parenting for Interdependence
- Noelle McDougall, Diagnosed with PWS at Age 2
An empowering guide for parents, this session focuses on strategies to foster independence in children with PWS, all while ensuring they receive the necessary support and care. It tackles the balance between providing support and encouraging self-reliance.
Sibling Panel - “Glass Children”
- Joe Gill, PWS Sibling
- Jordan Rivard, PWS Sibling
This unique session features a panel of siblings of PWS individuals, providing an intimate look at their experiences, challenges, and perspectives. It aims to foster understanding and empathy, highlighting the often overlooked "glass children" in families dealing with PWS.
ABA Therapy, Potty Training, and Sleep
- Annette Griffith, PhD, BCBA-D, Behavior Analyst, The Chicago School of Professional Psychology
This session dives into Applied Behavior Analysis, PWS-specific sleep challenges, evidence-based solutions, unique toilet training obstacles due to PWS physical traits, and successful training strategies.
Supportive Living Options
- Patrice Carroll, LICSW, Director of PWS Services, Latham Centers
- Lee Chamberlain, LCSW, VP and Chief Strategy Officer, Latham Centers
- Lynn Garrick, RN, Medical/Research Coordinator, PWSA | USA
- Brian Hughes, Ph.D., Professor of Psychology, University of Galway, Ireland
- Emily Lawrence, living with PWS; Rob Lutz, MBA, CFO & CBO, iBio, Inc.
This session reviews and recommends various living environments and support systems suitable for individuals with PWS. It explores different settings, from home care to specialized facilities, and outlines what to consider when choosing a supportive living option.
Session presentation will be available for download soon.
DAY 2
Welcome to PWSA | USA’s 37th National Convention Family Conference (DAY 2)
This session marks the start of the Family Conference's second day, providing an overview of the day's agenda and renewing the focus on sharing knowledge and building connections within the PWS community.
Clinical Trials Update
Stay informed with the latest clinical trials and potential breakthroughs in PWS treatment in this update session. It presents a comprehensive look at ongoing research, offering a glimmer of hope for new and improved management options for PWS.
The Role of Medications for the Management of Behavior Issues in Prader-Willi Syndrome
Dr. Deepan Singh delves into the role of medications in managing PWS-related behavioral issues like hyperphagia and tantrums. He discusses their impact, various types of medications used, potential side effects, and the benefits and risks associated with medication use.
Prader-Willi Syndrome: Nutrition Guidance and Recommendations
- Michael Tan, RD, Registered Dietitian, University of Florida
An expert-led presentation providing dietary recommendations for individuals with PWS. This session offers a detailed guide to optimizing nutrition, maintaining a healthy weight, and preventing overeating, which are common challenges in PWS management.
OH NO FIVE-0 and the Dark Web
This informative guide addresses law enforcement interaction, legal concerns, and web victimization in the context of PWS. It offers strategies for crisis preparation, working effectively with law enforcement, dealing with accusations, arrest situations, and managing online threats to those with PWS.
Improving Mental Health and Well-being for People with PWS
Dr. Tony Holland discusses mental health and well-being in PWS. He highlights the role of the hypothalamus and autonomic nervous system, the influence of physical and social environments, intervention strategies, the importance of societal support and the need for a stigma-free society.
Guardianship and Creating Financial Security for a Loved One with Special Needs
- Lisa Thornton, JD, Lisa Thornton Law
Topics covered include an overview of government benefit programs, Medicaid and waivers, ABLE accounts, special needs trusts, and other important considerations to help family members better understand how planning for a loved one with PWS is different both legally and financially.
PWSA | USA Luncheon and Volunteer Awards
This celebratory session recognizes the invaluable contributions of volunteers within the PWS community. In addition to a communal luncheon, it acknowledges the hard work and dedication of individuals making a difference in the lives of those affected by PWS.
Maximizing Success: The Role of Therapy in Supporting Children with PWS
- Angela Gustafson, SLP, Speech-Language Pathologist
This session provides an overview of the function of and connection between Physical, Occupational, and Speech Therapy, as well as what to look for when choosing a therapist for your child. It concludes with practical application strategies and a Q&A session.
Transitioning from an IFSP to an IEP
- Stacy Ward, MS, PWSA | USA Family Support Director
The transition for a child from early intervention services to early childhood special education and related services can be stressful for parents. Amy and Stacy share the differences between an Individualized Family Service Plan and an Individualized Education Program, the Federal requirements for the change from IFSP to IEP and tips to empower families as they navigate the transition.
(Fireside Chat) Conversation with the Clinicians: A Synergistic, Multidisciplinary Approach
- Maria Picone, Founder/CEO, TREND Community
- Ann Scheimann, MD, MBA, Pediatric Gastroenterologist, Johns Hopkins School of Medicine
- Deepan Singh, MD, Vice-Chair of Ambulatory Psychiatry Services, Maimonides Medical Center, Brooklyn, NY
Maria Picone moderates a fireside chat with Dr. Jennifer Miller, Dr. Deepan Singh, and Dr. Ann Scheimann. These experts bring their unique perspectives gained from many combined years of PWS clinical practice to discuss the complexities of PWS, how a holistic approach and promising drug therapies are improving patient mental health and overall health outcomes, and the challenges they still face.
Family Conference Closing Ceremony
This session concludes the Family Conference, recapping key highlights and learnings. It also acknowledges the contributions of attendees and sets the stage for the ongoing journey of the PWS community, pledging continuous support and collaboration.
Other Sessions
- Medical and Scientific Conference Recap: Presentation
David Agarwal, MD, FSIR, Associate Professor of Clinical Radiology Indiana University School of Medicine
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.