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