“Your child has Prader-Willi syndrome.” Everyone remembers where you were when you first heard those words. What does that mean? What do we do now? What will life be like for my child? In today’s world, you Google the term and likely see Prader-Willi Syndrome Association appear in response. When you complete the new diagnosis...
An Update on the Status of DCCR from Soleno Therapeutics
Soleno Therapeutics, Inc. 203 Redwood Shores Pkwy, Suite 500 Redwood City, CA 94065 650-213-8444 Dear members of the PWS community, We at Soleno Therapeutics would like to provide an update on the status of DCCR. As we have worked with the PWS community over the last several years, whether it is with advocacy leaders from...
Pioneers Who Served PWSA | USA – Board Members and Officers
PWSA l USA would not be here today without dedicated volunteers, including members of the board of directors and officers. In the early years, PWSA l USA relied solely on these volunteers to provide leadership, strengthen its financial status, develop programs, and write newsletters. After the organization grew to the point that they could employ...
April is Occupational Therapy Month: It’s Time to Celebrate the OTs in Your Life!
We celebrate and raise awareness for different professions, disabilities, or even favorite animals by designating days, weeks, or months in their honor. But, it can be all too easy to lose sight of professions that deserve recognition and celebration within the PWS community. One of these is Occupational Therapy. Occupational Therapists (OTs) are vital to...
Sleep Disturbances in Prader-Willi Syndrome
Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many...
Leading PWSA | USA; Our Executive Directors
The leadership in an organization is one of the most important elements to achieving long-lasting success. It is important for this individual to be passionate, knowledgeable and organized. They must be a team builder as well as build and maintain alliances. They must be vigilant in making sure there are the proper resources to maintain...
The Power of Parents: Gene and Fausta Deterling, Part Four in a Series
You may not know Gene and Fausta Deterling, but they changed your life and the life of your child with PWS. “Curtis has Prader-Willi syndrome.” The Deterlings stared at their doctor in disbelief when they heard those words in 1971. Gene was an engineer and a manager, a problem solver. “Can’t we do something?” That...
Good News is Found in Path for PWS: A Family’s Story of Hope
When our son, Robert, was born almost thirty-one years ago, we had no diagnosis. Seven years later a new blood test confirmed Prader-Willi syndrome. It was not a good day for our family, and from what I understand, it is not a good day for any family (then or now) facing a new diagnosis. I...
Pioneers in Obesity Prevention (And More); Part 3 in a Series
We always admire professionals who have found a special place in their heart to study, research, educate and care for persons with PWS and their families. Dr. Vanja Holm and Peggy Pipes MRH, RD, were two of those remarkable people and examples of some of the earliest pioneers who exemplified this. Dr. Holm graduated from...
Supporting Individuals with Prader-Willi Syndrome During the Pandemic
The pandemic has been a mixed bag for the PWS community. For some individuals, mental health has suffered, isolation has increased, and opportunities for engagement and inclusion have been limited. For others, former anxieties and struggles have been alleviated, and new hobbies and interests have developed. There are fewer opportunities to access food, but also...
Prader-Willi Syndrome Association Announces First Virtual Convention
FOR IMMEDIATE RELEASE: January 14, 2021 Sarasota, Florida: Prader-Willi Syndrome Association | USA (PWSA | USA) is pleased to announce its upcoming 36th National Convention is moving to an all-new virtual format. Due to the ongoing health concerns brought forth by the COVID-19 pandemic, the organization will provide members of the Prader-Willi syndrome community with a variety...
Our First Pioneers to Identify Prader-Labhart-Willi Syndrome: Dr.’s Zellweger, Prader, Willi and Labhart; Part 2 in a Series
Dr. Hans Zellweger was a tall, adventuresome doctor from a patrician family in Chur, the oldest town in Switzerland. After seeing the devastating effects of polio after World War I, his life goal was to understand neuromuscular disorders in children. After training across Europe, and working with Dr. Albett Schweitzer in Africa, he became chief...
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.