I am so pleased and privileged to announce the new partnership between PWSA (USA) and Shriner’s Hospitals for Children. This relationship is exciting and, indeed, hopeful.
During the 2015 PWSA (USA) National Conference I was fortunate to be introduced to Ms. Cheryl Stauss, former First Lady of Shriner’s International. Cheryl served as First Lady of Shriner’s International from 2014-2015 as her husband, Dale, served in the highest leadership position with Shriner’s International, Imperial Potentate. Cheryl’s work is so very significant for children in need of medical care and especially significant for children with Prader-Willi Syndrome (PWS) and their families.
During her tenure, Cheryl began the fundraising program, The Journey of Hope. This program promoted awareness of the high rate of scoliosis in children with PWS. Cheryl is no stranger to Prader-Willi Syndrome as her young grandson, Ben, has PWS. Cheryl’s awareness that 40% diagnosed with PWS also develop scoliosis, many during infancy, as well as her awareness that many families cannot access medical services due to financial constraints became the impetus for The Journey of Hope.
With this partnership, PWSA (USA) and Shriners Hospitals for Children want PWS families to know of the valuable resources provided by Shriners Hospitals for Children throughout the nation. There are 22 hospital locations and most have orthopaedic specialists. In addition, Shriner’s International will provide transportation for families travelling from home to the Shriner’s Hospitals for Children of choice.
In the world of Prader- Willi Syndrome, we take solace in knowing that Dr. Harold van Bosse, Shriners Hospital, Philadelphia, is not only an orthopaedic specialist, he is also a specialist in PWS. His kindness, compassion and expertise is renown to families in the PWS community and also to those of us who work and serve those living with PWS.
I encourage you to view the following links in order listed:
To learn more about The Journey of Hope, narrated by Cheryl Stauss, and Shriners Hospitals for Children, please visit https://www.youtube.com/watch?v=YrktmYzGZYk To learn how to refer your loved one for care at one of the 22 Shriners Hospitals for Children, please visit http://www.shrinershospitalsforchildren.org/refer-a-patient. To learn how Shriners International will provide transportation assistance to our families travelling from home to the Shriners Hospitals for Children of choice, contact the local Shriners Temple/center nearest you. To find that local center, go to http://www.shrinersinternational.org/locations.aspx and enter Location, select the one nearest you and then contact that center directly to request travel assistance.
God bless each of you and Shriners Hospitals for Children as we applaud Cheryl’s Journey of Hope and the hope it brings to our children with PWS and scoliosis.
Bonnie L. Shelley, Ph.D.
Coordinator of Medical Affairs
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.