If you are interested in spreading awareness of PWS, engaging elected officials, and traveling with fellow PWSA | USA supporters, YOUR time has come! PWSA | USA is looking for volunteers from each state to participate in launching a special project to promote PWS awareness throughout the United States. For more information, please contact Dorothea...
On June 17, 2021, representatives from PWSA | USA, FPWR and experts in the field of Prader-Willi syndrome research met with the FDA’s Center for Drug Evaluation and Research to discuss issues related to PWS clinical trials. The purpose of this meeting was to promote dialogue between PWSA | USA, FPWR and members of the...
This has been an incredible week for PWSA | USA and the rare disease community. In collaboration with RDLA and the Every Life Foundation, PWSA | USA took part in Rare Disease Week on Capitol Hill. We had the opportunity to represent our community and meet with Congressmen Tonko, Delgado, Bacon, and Senators Schumar, Gillibrand,...
As told by her mom Lauren When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation. PWSA | USA sent us a packet of information...
As told by her mom, Jennifer The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we...
Rare Disease Week will take place July 14, 2021 – July 22, 2021 and it’s a chance to make your voice heard! EveryLife Foundation will be leading Rare Disease Week, which educates those of the rare disease community on federal legislative issues, meet other advocates, and share their unique stories with legislators. If you are...
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...
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...
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...
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.
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.