On Tuesday evening, PWSA | USA hosted a Community Conversation bringing together members of the PWS community to informally share concerns, ideas, and updates on Dr. van Bosse’s recent departure from Shriners Hospitals. PWSA | USA CEO Paige Rivard has spoken directly with Dr. van Bosse who assured her that he remains committed to the PWS community and is actively looking for a job that will allow him to continue to support individuals with PWS. In the meantime, Shriners Hospitals is transferring Dr. van Bosse’s patients to other orthopedic physicians, such as Dr. Pahys and Dr. Samdani. If you have an upcoming appointment at Shriners and you have not heard from them, please call Pam at (215) 430-4097
Although we are all disappointed that Dr. van Bosse will not be at Shriners, there are benefits that Shriners offers that other hospitals and clinics do not, such as travel and lodging. It is important to weigh all the pros and cons before making a decision whether to stay at Shriners or go elsewhere. We encourage you to request your child’s entire medical chart be downloaded to a disc regardless of your decision at this time. Should you decide to see another physician at some point, you will have the records on hand to share.
The community collectively created the list below of orthopedic physicians that have treated patients with PWS:
- Christopher Vara, MD at Shriners Children's Twin Cities in Minnesota
- Jason Lowenstein, MD in Morristown, New Jersey
- Walter Samora, MD at Nationwide Children’s Hospital in Columbus, Ohio
- Michael Mendelow, MD at Shriners Hospitals for Children-Greenville in South Carolina
- Suken Shah, MD at Nemours Children's Health in Wilmington, Delaware
- Stephen England, MD at Gillette Children’s Specialty Healthcare in St. Paul, Minnesota
This Community Conversation was such a success that PWSA | USA has decided to host them monthly! Join us on the second Tuesday of every month at 7pm CST. The next Community Conversation will be Tuesday, October 12th focused on Guardianship!
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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.