PWSA | USA is excited to announce the launch of our new Healthcare Provider Project ECHO Series on May 16, 2023, at 5:00 p.m. CST. We are proud to offer this opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO® in the United States.
"We understand the need to further educate healthcare providers taking care of our loved ones. Through this ECHO series we will offer access to specialists in PWS, expanding knowledge and sharing standards of care for PWS patients," said Paige Rivard, MBA, PWSA | USA CEO.
Our first healthcare ECHO topic will be “Genetics in PWS 101” presented by Jessica Duis, MD, Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado, followed by a 20-minute case study on PWS presented by Shawn McCandless, MD, Chair of the Department of Genetics and Metabolism at Children's Hospital Colorado.
PWSA | USA’s Healthcare Provider Project ECHO Series will touch on a wide range of healthcare topics in the PWS space and will be available for all health professionals across our network including (but not limited to): Geneticists, Pediatric Endocrinologists, Neonatologists, Nurses, Pediatricians, Endocrinologists, Psychiatrists, Psychologists, Social Workers, Occupational Therapists, Pulmonologists, Orthopedic Surgeons, Dieticians, Physiotherapists, Speech and Language Therapists, Medical Students and Professional Caregivers.
While this ECHO series is only for healthcare providers to attend, recordings of the webinars will be made available for our PWS families on our website.
Questions? Contact PWSA | USA at research@pwsausa.org or (941) 312-0400.
What is Project ECHO?
Project ECHO® (Extension for Community Healthcare Outcomes) was established at the University of New Mexico in 2003. Using videoconferencing technology and enabling software, Project ECHO connects providers in underserved communities with specialists and experts for long-term tele-mentoring, collaboration, and case-based learning on urgent health conditions. Today, people and organizations from all over the world leverage this ECHO Model™ to scale their own social initiatives in health and in other fields like education and social justice. ECHO partners in 40 countries and operates more than 860 ECHO networks, which have trained more than 140,000 professionals eager to learn best practices in their field. For more information, please visit: https://echo.unm.edu.
SPEAKERS
Jessica Duis, MD, Associate Professor of Pediatrics and Genetics, Children’s Hospital Colorado, University of Colorado
Dr. Jessica Duis is an Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado. She did her medical training at Johns Hopkins School of Medicine in Baltimore, MD. She completed a post-doctoral fellowship in the Johns Hopkins Department of Psychiatry and Behavioral Sciences. She is a board-certified pediatrician and medical geneticist who practices in the area of genetics and complex/special care pediatrics and primarily performs diagnostic work up and management for individuals with rare disorders focused on neurogenetic conditions and rare genetic causes of obesity and metabolic conditions. She has focused her career on chromosome 15 disorders including Angelman Syndrome, Duplication 15q, and Prader-Willi syndrome. She has founded and built Centers of Excellence for Angelman, Prader-Willi, duplication 15q, and Pitt Hopkins Syndromes.
Dr. Duis’ career has spanned translational, clinical and bench research. She is passionate about establishing standards of care and personalized therapeutic interventions for individuals with neurodevelopmental disorders to improve quality of life and equity of care. She recently published guidelines on the diagnostic work up and management of sleep concerns for individuals with PWS.
Shawn McCandless, MD, Chair, Department of Genetics and Metabolism, Children's Hospital Colorado
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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.
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 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.
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 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.