One of our goals for 2015 is to focus on ways to have more impact with ER situations. We all know that taking a child or an adult with Prader-Willi syndrome to the ER can in and of itself be life-threatening. I certainly know this through my experience of covering most medical crises for over 16 years. Due to the fact that there are over 6,000 rare disorders, we cannot expect every ER physician and staff person to know in depth about every disorder, but we have to find ways to get them the information in a way that they can hear and will believe. We have for years asked every person caring for someone with the syndrome to carry our small Medical Alert booklet wherever they go, and we have an extensive medical section on our PWSA (USA) website – but that is not enough.
We have had the recent good fortune of adding to our volunteer team, Dr. Dan Beaver, a 30 year ER physician, who is the parent of a young adult with the syndrome and husband of our crisis counselor, Kate. He has been able to look at our concern from the ER perspective. Dan sent me information on UpToDate published by Wolters Kluwer which is often the main site that ER physicians and other physicians/residents worldwide go to get their information. I realized in reading their information on PWS that our G.I. expert, Dr. Ann Scheimann, who is a long-term volunteer member of our PWSA (USA) Clinical Advisory Board (CAB), was the key author of the information on PWS. I emailed Ann and discovered that she had just completed a revision, so Ann wrote to the deputy editor of UpToDate and asked that information on our PWSA (USA) website and that of IPWSO, what we do, and our contact information be added – which has been approved.
Add to this the fact that our volunteer Dr. Jim Loker, also a CAB member, parent of a young person with PWS, and husband of our medical liaison, Carolyn, recently spearheaded the completion of the new G.I. algorithm. It has been published in our May-June 2015 Gathered View newsletter and on our website. This algorithm will help direct ER medical staff what to look for and do when GI problems are presented in PWS. Also, our PWSA (USA) members, Rick and Kim Settles, in memory of their son Patrick, were the impetus behind the creation of the new PWS Constipation Medical Alert article which will be extremely helpful for ER physicians.
A new technological way to aid in ER situations is through mobile phone apps. PWSA (USA) helped support our international organization, IPWSO, in creating the new PWS android app, and our gratitude goes to Patrick Settles’ parents for their donation to help PWSA (USA) create an iPhone app which will be available in the near future.
This is not the end to our quest to create more ER support. Saving and Improving the Quality of Lives has been the PWSA (USA) mission for 40 years – and will continue to be our # 1 goal. This entire evolution of ER support is a beautiful example of the synchronicity between our PWSA (USA) staff, professional volunteers, and devoted parents. Please help us to be able to continue to provide this kind of essential support through your volunteer and financial donations during our Prader-Willi syndrome awareness month of May.
Janalee Heinemann
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.