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!