Keynote: PWS Behavior Management Strategies and Interventions
Presenter: Lisa Graziano, LMFT
In her Keynote Address, Lisa Graziano provides an overview of some of the most effective PWS-specific behavior management strategies and interventions that effectively reduce the potential for unwanted behaviors including arguing, temper tantrums, oppositional and defiant behaviors, avoidant behaviors, lying, repeated questions, and skin picking.
Exercise & Motivation
Presenter: Keegan Johnson
Keegan Johnson, CEO of Let’s Go Fitness, an online fitness community for diverse abilities discusses the benefits of exercise and the secret to motivation.
Medical Issues in PWS: What you Didn’t Know You Needed to Know
Presenter: Tina Didino, LPN
Even for the most experienced provider, navigating the complex medical issues in someone with PWS can be challenging. This session discusses the most common and complex issues for which providers should be especially aware.
Rights vs. Health & Safety / Best Practice
Presenters: Jeff Covington, MPH; Barbara J. Goff, Ed. D; Mark Lister, BS, BCaBA; Marguerite Rupnow, MBA; Mary K. Ziccardi, B.S.
How do we, as care providers, find the balance between honoring a person’s human rights and adhering to best practices regarding the health and safety of people diagnosed with Prader-Willi syndrome? In this breakout session, leaders in providing care from across the country share their experiences.
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Medical & Scientific Conference: Day 1 | June 23, 2021
Keynote: Behavioral Problems in Prader-Willi Syndrome – What to Expect
In his Keynote Address, Dr. Deepan Singh recognizes the spectrum of behavioral health symptoms (BH) noted in Prader-Willi syndrome (PWS), explains compulsivity, impulsivity and “response perseveration” as key aspects of BH in PWS, lists commonly used treatment strategies for the management of BH in PWS, and more.
A Year in Review: Updates on Care, Treatment, and Clinical Trials
Presenter: Jennifer Miller, MD
Dr. Miller reviews the common endocrinopathies in individuals with PWS, as well as the treatment options available. She will also provide updates on new research in endocrinology that affect individuals with PWS.
Pulmonary Issues in Prader-Willi Syndrome
Presenter: Amee Revana, MD
Dr. Amee Revana discusses pulmonary issues in PWS, including obstructive sleep apnea and central sleep apnea, as well as the utility of home sleep apnea testing in this population.
Medical & Scientific Conference Day 1: Abstract I
Speaker: Kasey Bedard
Authors: Annette K. Griffith; Mark A. Lister, Mark Swain
Kasey Bedard discusses behavioral & dietary management for adults with PWS in a residential setting.
Medical & Scientific Conference Day 2: Abstract II
Speaker: Theresa Strong, PhD
Authors: Jessica Bohonowych, Stacy Ward, Lisa Matesevac, Caroline Vrana-Diaz, Lauren Swartz-Roth
Using data from the global PWS registry, this session covers the impact of COVID-19 quarantines and stay at home orders on PWS families.
Medical & Scientific Conference Day 1: Abstract III
Speaker: Lynne Bird, MD
Authors: Steven Phillips, Deborah Lee, Elizabeth Messersmith, Elena Nikonova
This session covers the preliminary results from a randomized, placebo-controlled phase 2 trial using Synthetic Cannabidiol (CBD) oral solution in seven individuals with Prader-Willi syndrome.
Medical & Scientific Conference Day 1: Abstract IV
Presented by: Selene Etches, MD
This session covers Cyclical Catatonia in a 10-year-old boy with Prader-Willi syndrome.
Medical & Scientific Conference Day 1: Abstract V
Speaker: Lisa Matesevac, AuD
Authors: Jessica Bohonowych, Elizabeth Roof, Elisabeth Dykens, Jennifer Miller, Shawn E. McCandless, Theresa Strong
This session gives an update on the 2021 PATH for PWS study – A non-interventional, observational, natural history study of serious medical events in Prader-Willi syndrome.
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Medical & Scientific Conference: Day 2 | June 24, 2021
Keynote: Recent Developments at IPWSO: The ECHO Programme, COVID Survey and More
Presenter: Tony Holland, MD
Dr. Tony Holland discusses new developments with a particular focus on the global COVID survey, the development of IPWSO’s Project ECHO, and two initiatives, one focusing on evaluating specialist residential services for people with PWS and the other on mental health and behavior.
Adults with PWS in Denmark: Social and Medical Care & Possibilities for Living
Presenter: Susanne Blichfeldt, MD
Dr. Susanne Blichfeldt shares information about adults living with PWS in Denmark and information about Medical Centers in Denmark specializing in PWS.
Care of People with PWS in Germany in General and in Pandemic Times
Presenter: Norbert Hodebeck-Stuntebeck, PhD
Dr. Norbert Hodebeck-Stuntebeck discusses the history of developing offers for people with PWS in Germany and what is available in terms of residential offerings today.
Medical & Scientific Conference Day 2: Abstract I
Presenter: Elizabeth Roof, MA
This session covers Intranasal Carbetocin and how it improved PWS symptoms in its CARE-PWS phase 3 study.
Medical & Scientific Conference Day 2: Abstract II
Presenter: Janice Forster, MD
This session covers pharmacogenetic testing results in a case series of patients with PWS DEL vs UPD.
Medical & Scientific Conference Day 2: Abstract III
Speaker: Jennifer Miller, MD
Authors: Eric Felner, Nicola Bridges, Lynne Bird, MD, Moris Angulo, MD, Evelien Gevers, Ashley Shoemaker, Jack Yanovski, Merlin Butler, MD, Kathryn Obrynba, Parisa Salehi, Patricia Hirano, Kristen Yen, Shaila Ballal, Neil Cowen, Anish Bhatnagar
This session covers the therapeutic response to DCCR (Diazoxide Choline) Extended-Release Tablets in patients with Prader-Willi syndrome prior to the onset of the COVID-19 pandemic.
Medical & Scientific Conference Day 2: Abstract IV
Speaker: Olivia Veatch, MS, PhD
Authors: Waheeda Hossain, MD, MPH, Merlin Butler, MD, PhD, Neil Cowen, PhD, MBA, Ann Manzardo, PhD
This session discusses the impacts of ATP-Sensative Potassium Channel Gene Variants on Baseline Insulin and Hyperphagia in Prader-Willi syndrome.
Medical & Scientific Day 2: Abstract V
Speaker: David Michalec, PhD
Author: Erin Given, BA
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General Conference: Day 1 | June 25, 2021
PWSA | USA CEO National Convention Welcome
Presenter: Paige Rivard
PWSA | USA’s CEO Paige Rivard welcomes attendees to the 2021 Virtual National Convention and gives information about our organization.
Keynote: Hello World…Ready or Not…Here I Come!
Presenter: Clint Hurdle
In his Keynote Address, Clint Hurdle shares his experiences as a father to a child with PWS and offers ways to cope, helpful tips for parents (especially dads), and stresses the point – there is hope!
All Dads on Deck
Presenter: Clint Hurdle
A sharing session for dads with children who live with PWS.
Nutrition and PWS
Presenter: Melanie Silverman, MS, RD, IBCLC
PWSA | USA Special Education Advisory Board Education Panel
Presenters: Amy McTighe, PhD, Mary K. Ziccardi, BS, Brittni Kliment, M.Ed, BJ Goff, EdD
Meet the members of PWSA | USA’s Special Education Advisory Board (SEAB) as they discuss various topics in education. Topics discussed will include behaviors, suspensions, extra-curricular activities, general education, self-contained classes, and residential schooling placement for individuals with PWS.
Tackling Problem Behavior with Applied Behavior Analysis
Presenter: Kasey Bedard, MS, BCBA
Tantrums, skin picking and rigidity are only a few of the behavior problems that children with PWS may struggle with during their lifetimes. This presentation gives an overview of the prevalence of various problem behavior and provides details on evidence-based strategies to understand and reduce problem behavior while teaching appropriate alternatives.
A Grandparent’s Love
Presented by Chuck & Becky French and Dennis & Julie Kalasek
Chuck and Becky French alongside Dennis and Julie Kalasek lead a Grandparents Sharing Session.
An Invitation to Self-Care and the PWS Journey
Presenter: Emily Felt
This session explores how self-care is more than just sleep, exercise and giving ourselves treats and rewards for good behavior. Self-care is essential for managing well in the context of PWS. It’s also an opportunity for self-empowerment and self-knowledge that can help us live with less stress and greater fulfillment. This session addresses the needs of people with PWS as well as their parents, siblings and caregivers using tools from the science of well-being.
International Approaches to Adults Living with PWS
Presenters: Lee Chamberlain, LCSW, Norbert Hodebeck-Stuntebeck, PhD, Karin Birkedal, Matt McCleery
Different cultures have different philosophies, resources, and strategies when it comes to supporting the success of people with disabilities. In this session, PWS parent Matt McCleery (Homer, age 14) leads a wide-ranging discussion with highly experienced PWS providers from Denmark, Germany, and USA.
Recognizing Sleep-Related Symptoms of PWS
Moderated by Maria Picone, Co-Founder and CEO of TREND Community, with expert panelist Dr. Glaze of Texas Children’s Hospital/Baylor College of Medicine and featuring Kristi and Justice Rickenbach, a family navigating life with narcolepsy, cataplexy, and PWS.
This panel discusses how to recognize, treat, and live with sleep-related symptoms of Prader-Willi syndrome.
Behavior Problems in Prader-Willi Syndrome: What to Expect
Presenter: Deepan Singh, MD, FAPA
Dr. Deepan Singh recognizes the spectrum of behavioral health symptoms (BH) noted in Prader-Willi syndrome (PWS), explains compulsivity, impulsivity and “response perseveration” as key aspects of BH in PWS, lists commonly used treatment strategies for the management of BH in PWS, and more.
Financial Management & Special Needs Trusts
Presenter: Ivailo Grigorov, MBA
This educational workshop shares information about special needs planning. Topics covered include an overview of SSI & SSDI, Medicaid & Waivers, ABLE accounts, special needs trusts, and other important considerations to help family members better understand how planning for a child with special needs is different both legally & financially.
The Orthopedics of Prader-Willi Syndrome
Presenter: Harold van Bosse, MD
Dr. Harold van Bosse shares what musculoskeletal issues can present, and the different options for treating them from the perspective of a pediatric orthopedic surgeon with a large patient population of children with PWS. He also shares strategies for addressing developmental delay, for gaining muscle and bone strength, and monitoring and treating disorders of the hips in children with PWS, and more.
Creating a Sensory Diet
Presenter: Janice Agarwal, PT, CDNT
This session covers the broad spectrum of Sensory Integration techniques and common-sense strategies that can be used immediately to improve motor coordination and better organize movement.
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General Conference: Day 2 | June 26, 2021
Medical & Scientific Conference Recap
Presenter: David Agarwal, MD
David Agarwal, MD, a member of the PWSA | USA Clinical Advisory Board, summarizes the presentations from the Medical & Scientific Conference held Wednesday, June 23rd and Thursday, June 24th. He also outlines the topics covered by the abstract submissions as well as inform the audience about current and upcoming research studies and clinical trials.
Pharmaceutical Panel
Presenter: Paul Pereira, J.D.; Elizabeth Messersmith, PhD; Jeffrey Dayno, MD; Anish Bhatnagar, MD; Sara Cotter
Learn from the leading pharmaceutical representatives: Harmony Biosciences, Levo Therapeutics, Radius Health, Saniona, and Soleno Therapeutics. This informative session provides a high-level overview of each organization, and the important clinical work they are doing to develop treatments for Prader-Willi syndrome trials.
Supplemental Therapies
Presenter: Abbie Ogilbee, DPT
Physical, occupational, and speech therapy are typical services a child with Prader-Willi syndrome will receive to meet developmental milestones. There are supplemental therapies that can expose a child to new learning environments and thus bring out novice skills in a short time. Abbie Ogilbee, DPT, explores supplemental services, community programs, and specialty services a therapist can provide to aid a child in their learning adventure.
Using the Environment to Manage Behavior
Presenter: Janice Forster, MD
Janice Forster describes how to build a TRAIN for your child with PWS. The TRAIN is a specially designed tool for PWS that reduces anxiety, insecurity, and noncompliance in PWS.
A Global, Comprehensive Understanding of Food, Behavior and Food and Behavior in PWS
Presenter: Linda Gourash, MD
If it’s not hunger, what is it? Dr. Gourash discusses the complicated relationship between food and behavior in Prader-Willi syndrome.
GI Issues in Prader-Willi Syndrome: Perspectives for 2020 & Beyond
Presenter: Ann Scheimann, MD
Dr. Ann Scheimann gives a comprehensive overview of GI issues in Prader-Willi syndrome, including updates on recent literature and research with respect to GI related aspects of PWS.
Understanding Prader-Willi Syndrome & Autism
Presenter: Cindy Szapacs, M.Ed, BCBA
Prader-Willi syndrome is a relatively straightforward diagnosis. Once symptoms are observed, a blood test can confirm the diagnosis. But, what do you do when you suspect your child, who already has a PWS diagnosis, may also have autism? Many of the behavioral characteristics of PWS crossover are similar to those of autism.
A Year in Review: Prader-Willi Syndrome
Presenter: Jennifer Miller, MD
Dr. Jennifer Miller reviews the common endocrinopathies in individuals with PWS, as well as the treatment options available. She also provides updates on new research in endocrinology that affect individuals 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.