2023 Convention Logo Horizontal, Prader-Willi Syndrome Association | USA

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)

- Paige Rivard, MBA, PWSA | USA CEO
- 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

- Cristol Barrett O’Loughlin, Founder & CEO, ANGEL AID CARES (Legal Name: A Nonprofit Group Enriching Lives, Inc)

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

- Jessica Duis, MD, Associate Professor of Pediatrics and Genetics Children’s Hospital Colorado, University of Colorado

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

- Jessica Patay, Founder and Executive Director, We Are Brave Together

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

- Ann Scheimann, MD, MBA, Pediatric Gastroenterologist, Johns Hopkins School of Medicine

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

- Harold J.P. van Bosse, MD, Pediatric Orthopaedic, SSM Health/Saint Louis University/Cardinal Glennon Children's Hospital

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

- Amy McDougall, MS, School Psychologist Fulton City School District
- 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”​

- Jessica Duis, MD, Associate Professor of Pediatrics and Genetics Children’s Hospital Colorado, University of Colorado
- 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​

- Kasey Bedard, Ph.D., BCBA-D, Behavior Analyst, Delta Behavior Services
- 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​

- Scott Arant, Founder, former CEO, American Health Imaging
- 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)

- Paige Rivard, MBA, PWSA | USA CEO

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

- Representatives from Soleno Therapeutics, Aardvark Therapeutics, Acadia Pharmaceuticals, Neuren Pharmaceuticals, and Gedeon Richter

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

- Deepan Singh, MD, Vice-Chair of Ambulatory Psychiatry Services, Maimonides Medical Center, Brooklyn, NY

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

- Jennifer Miller, MD, Professor of Pediatric Endocrinology, Gainesville, FL
- 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

- Tammie Penta, Retired Police Sergeant

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

- Tony Holland, MD, Clinical and Academic Psychiatrist, President of IPWSO

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

- Ivailo Grigorov, MBA, Financial Advisor, Northwestern Mutual
- 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

- Janice Agarwal, PT, CNDT, President and Executive Director, Watch Us Farm
- 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

- Amy McDougall, MS, School Psychologist, Fulton City School District;
- 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

- Jennifer Miller, MD, Professor of Pediatric Endocrinology, Gainesville, FL
- 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

Paige Rivard, MBA, PWSA | USA CEO

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