Behavior Summit: ABCs of Behavior

Challenging Behaviors: Prevention

Understanding Tantrum Behavior in PWS

Behavior Summit: Functional Behavior Analysis in the School Setting

Find Your Voice: Advocacy for PWS Health Care – April 1, 2022

Friday, April 1, 2022

Speaker: Stacy Ward, MS, Director of Family Support, PWSA | USA
Topics: Health advocacy (strategies, tools, and resources), common urgent health topics (high pain threshold, respiratory concerns, temperature regulation problems)

Find Your Voice: Advocacy for PWS Health Care – April 8, 2022

Friday, April 8, 2022

Speaker: Lynn Garrick, RN, Medical/Research Coordinator, PWSA | USA
Topics: Key advocacy points, common urgent health topics (GI problems, fragile bones, skin picking, food seeking, weight management)

Find Your Voice: Advocacy for PWS Health Care – April 22, 2022

Friday, April 22, 2022

Speaker: Barb Dorn, RN, BSN
Topics: Concerns for the hospitalized person with PWS (ER information, anesthesia, post-op monitoring, medication sensitivity, food security)

Find Your Voice: Advocacy for PWS Health Care – April 29, 2022

Friday, April 29, 2022

Speaker: Lauren Schwartz-Roth, PhD, Clinical Psychologist, FPWR
Topics: Mental health crisis, getting help (differentiating between typical PWS behaviors & a mental health diagnosis, identifying and treating serious mental health issues)

Drug Development and Clinical Trials 101

Drug Development and Clinical Trials 101

Drug Development and Clinical Trials 101 webinar presented by Dean Carson – Vice President of Scientific Affairs, Saniona, Jessica Ernest – Vice President of Clinical Operations, Levo Therapeutics, Kristen Yen – Vice President of Clinical Operations, Soleno Therapeutics and Michele Roy – Vice President of Regulatory Affairs, Harmony Biosciences.

Click here for Presentation

COVID-19: How do we protect our loved ones with PWS?

COVID 19 Risk to Individuals with PWS How do we protect our loved ones with PWS

During this live webinar, Dr. Jessica Duis and Dr. Stephen Hawkins addressed general information about COVID-19, preventive measures, the risk in individuals with PWS, and offered general mental health support/resources during this challenging time.

Global PWS Registry Webinar

Global PWS Registry Webinar

The purpose of the Global PWS Registry is to enhance the understanding of PWS by describing the full spectrum of PWS characteristics. The Registry will also facilitate the completion of clinical trials and other research studies in the field of PWS. Join PWSA | USA and FPWR for this live informational webinar to learn more about our combined efforts to support and accelerate PWS research.

Developing Your Child’s Elementary School IEP

During this webinar, Amy will discuss the mandated elements of an Individual Education Plan and outline guiding questions to ensure that your child's individual needs, particularly those related to PWS, are addressed as you work in collaboration with your district to develop your child’s elementary school IEP.

Developing Your Child’s Preschool IEP

During this webinar, Amy will discuss the mandated elements of an Individual Education Plan and outline guiding questions to ensure that your child's individual needs, particularly those related to PWS, are addressed as you work in collaboration with your district to develop your elementary school IEP.

Social Skills for Individuals with PWS

Elizabeth Roof discusses social skills in PWS: the strengths, the weaknesses and how people with PWS see others and view friendships. During this webinar, she talks about a social skills study and how the positive results can be adapted for use in your home with your child.

PWS and Orthopaedics

Dr. van Bosse has been practicing pediatric orthopedic surgery exclusively since 1994. He joined the staff of the Shriners Hospitals for Children – Philadelphia in 2008 and devotes much of his work to treating very young children with PWS and spine deformities. During this live webinar, Dr. van Bosse will discuss diagnosis and treatment of orthopedic challenges in PWS, including osteoporosis and scoliosis.