Calling all fathers!
A study on the role of PWS male caregivers has been approved by PWSA (USA).
Dr. Leon Caldwell has been awarded a grant to do a study on the needs and issues of PWS fathers and other male caregivers. The purpose of this study is to learn about the coping and parenting styles of male caregivers of children and adults with Prader-Willi syndrome. There is little information relative to the effectiveness of PWSA (USA) materials for male caregivers. More broadly, male perceptions and attitudes regarding caregiving for children and adults with chronic illnesses and developmental disorders are rarely investigated. PWSA (USA) has an opportunity to lead in this area and create value for the organization as it creates a set of support tools specific to male caregivers.
This proposal aims to address the following questions:
1. What are the perceptions of male caregivers regarding PWSA (USA) support materials?
2. What are the support needs of male caregivers?
3. How might PWSA (USA) meet the differential needs, if any, of male caregivers?
4. Create a set of programmatic recommendations for PWSA (USA) and State Chapters.
5. Disseminate findings in a variety of formats that will increase the awareness of PWSA (USA) in the research and family medicine community
Understanding the risks of deep vein thrombosis (DVT’s) and pulmonary embolisms (PE’s) in PWS.
There are now over 480 individual PWS deaths in the PWSA (USA) database making it the largest collection in the world looking at the causes of death in PWS. Approximately 7% of the individuals with a reported cause of death died from pulmonary embolism. This has not been reported as a risk factor in Prader-Willi syndrome in prior studies on mortality.
As an organization, thanks to the diligent file reviews by Dr. Jim and Carolyn Loker, we have only recently become aware of the risk of deaths from PE’s in Prader-Willi syndrome. Pulmonary embolisms (PE’s) are caused by a blocked artery in the lungs. The most common cause of such a blockage is a blood clot that forms in a deep vein in the leg (DVT), so we need to have a better understanding of these significant risk factors. PWSA (USA) will be doing an extensive survey among our membership and supporting a statistical review study.
We will be counting on you to assist us by completing surveys in the near future. We can only save and transform lives with your help!
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.