GENETICS IN PWS 101
Thank you to those who attended our first ECHO 4 PWS Webinar!
PWSA | USA's - ECHO 4 PWS Health Care Provider Series
PWSA | USA is excited to announce the launch of our new Health Care Provider Project ECHO Series. We are proud to offer this opportunity to health care 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 health care 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 focused on “Genetics in PWS 101, and was 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 Health Care 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 health care providers to attend, recordings of the webinars will be made available for our PWS families on our website.
Be on the lookout for more details about future ECHO 4 PWS webinar opportunities.
Speakers
Dr. Jessica Duis, MD
Dr. Jessica R. Duis is a clinical geneticist and pediatrician specializing in Prader-Willi Syndrome. She is currently a pediatric geneticist and special care pediatrician at Children’s Hospital Colorado, where she has built multidisciplinary Centers of Excellence across the United States with a focus on patient care, translational research, clinical trial design, and outcome measures. Her research has included investigator-driven clinical trials and translational outcome measure design both in the lab and in the natural environment. As an Associate Professor at Colorado University School of Medicine, Dr. Duis is dedicated to educating the next generation of medical professionals and staying at the forefront of research and clinical practice in the field of genetics.
Dr. Shawn McCandless, MD
Dr. Shawn McCandless is the Chair of the Department of Genetics and Metabolism and Children’s Hospital Colorado. He received his medical degree from Lewis Katz School of Medicine at Temple University and has been in practice for nearly 30 years. He specializes in clinical biochemical genetics, clinical genetics, and medical biochemical genetics and is experienced in Prader-Willi syndrome, mitochondrial diseases, inborn errors of metabolism, intellectual disability, and neonatal screening.
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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® […]
Participate in a PWS Parent, Caregiver Self-Care Survey
The Chicago School of Professional Psychology is asking parents and caregivers in the PWS community to participate in a brief survey to investigate challenges that parents have when completing daily self-care skills with their child with PWS. This survey is for parents and caregivers with a child between the ages of 12-25 living with PWS. […]
Calling All PWS Caregivers!
The Chicago School of Professional Psychology is looking for PWS caregivers to participate in a asynchronous computer training on medication and data collection procedures. Upon completion, you will be entered to win a $50 Amazon gift card! Click the button below to learn more about this opportunity and to find the training link. Thank you!
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.