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 โ Vice President of Scientific Affairs, Saniona, Jessica Ernest โ Vice President of Clinical Operations, Levo Therapeutics, Kristen Yen โ Vice President of Clinical Operations, Soleno Therapeutics and Michele Roy โ Vice President of Regulatory Affairs, Harmony Biosciences.
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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 childโs 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 โ 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.
Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
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.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
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.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.