When we initially received Noelle’s diagnosis, we grieved the loss of all the typical long-term dreams that we had for our only daughter and acknowledged that we were going to need to live our lives differently. We then decided that PWS would not define her or our family. Certainly there are parts of our lives...
FOR IMMEDIATE RELEASE Contact: Paige Rivard, CEO Prader-Willi Syndrome Association USA (PWSA | USA) privard@pwsausa.org / 941-487-6724 Prader-Willi Syndrome Association | USA Expands Capacity to Serve With Transition of the Prader-Willi Care Coordination Program from The Children’s Institute of Pittsburgh (May 19, 2021- Sarasota, FL) PWSA | USA, a national nonprofit organization with a...
Many of you have called the PWSA | USA office in need of guidance for your child’s IEP, support for behaviors that are out of control, information on a supportive living placement and many other subjects. You’ve no doubt been met with the calm, reassuring and knowledgeable voice of a Crisis Intervention Counselor. Unless you’ve...
Thinking back to NICU, and being told “I don’t know what’s wrong with your baby. But something is, and it’s pretty serious.” I never ever thought we’d get to the point where we could could just live our lives casually. Casually cuddling on the couch. Casually packing up and heading out for a walk. Casually...
As I was growing up, my family moved to Switzerland. At the time, we were not aware that I had Prader-Willi Syndrome. As a child, I did very well in school. I attended an international school in Switzerland, it was difficult adjusting to a new school, especially in a foreign country. I moved to Switzerland...
Hi, my name is Aran (pronounced Aaron), and I am part of the Prader-Willi Syndrome family. I was diagnosed at three weeks old. I was fortunate that my state has a fantastic Early Intervention program, and I was able to start physical and occupational therapy within the fourth week. That work was tough, but it...
This article began as an acknowledgement of the nearly 30 years of PWSA | USA elected delegates to IPWSO, the International Prader-Willi Syndrome Organisation, but rapidly became much more than that. PWSA | USA was actually instrumental in the founding and development of IPWSO. The mission and vision of IPWSO is similar to that of...
Teacher Appreciation Week Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you? I know I would not be. I considered being a teacher – who does not love the idea of getting out of work by three every day and having summers off? What...
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Despite our growing understanding and knowledge of the management of Prader-Willi syndrome (PWS), there are still persons with PWS who experience life-threatening complications due to obesity; and others who require inpatient treatment for severe, challenging behaviors. There are a handful of professionals who became experts in caring for these individuals at a time when they...
Providing residential care services to children and adults with Prader-Willi syndrome (PWS) is often very different and challenging for human service professionals. Some of the supports that are often successful for persons with PWS go against what many professionals have learned in school about providing services for the developmentally disabled. Limiting access to food and...
“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...
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...
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...
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 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...
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...
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...
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...
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...
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...
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...
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...
It’s hard to imagine a time when you couldn’t pick up your phone or computer and do a “search” for information, resources and/or support on PWS. Or a time when there were no organizations, homes, conferences devoted to advancing research, education and awareness about PWS. A time when there was little to no research to...
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.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
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.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
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.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
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.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
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.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
