Empowering Individuals
Supporting Families
Have Your Voice Heard by Members of the FDA!
YOU have the opportunity to have your voice heard by several U.S. Food and Drug Administration (FDA) representatives at PWSA | USA’s 37th National Convention! The Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting is FREE for ALL to attend, and will take place Thursday, June 22, 2023, from 12:00 – 4:30 p.m. EST both in-person at the Hilton Orlando Buena Vista Palace and virtually via Zoom. It will offer an opportunity for our families, healthcare professionals, and other PWS stakeholders to come together and advocate for our loved ones living with PWS. Learn more about this historic event and find the links to register by clicking the button below.
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What we do
Advocacy & Awareness
Increasing awareness and effectively advocating for Prader-Willi syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change for our loved ones.
Family Support
PWSA | USA' Family Support team provides individuals diagnosed with Prader-Willi syndrome, their families, and care providers with critical information and resources on PWS. We also provide education to medical providers, schools, and professional care givers through ongoing trainings, toolkits and other valuable resources. We support the family from the NICU through all stages of the PWS journey.
Research
PWSA | USA seeks to support research projects with the potential for immediate and high impact for the PWS community. The goal is to fast-track better treatment for the syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal.
Events & Fundraisers
Upcoming Events
We invite you to join us June 21 – June 24, 2023, in sunny Orlando, Florida at the Hilton Orlando Buena Vista Palace. PWSA | USA’s Convention will provide exciting opportunities to learn, connect (and reconnect), and hear about the latest PWS research. Taking place in Orlando, FL on June 21-24, 2023, this world-class event will […]
Lake Buena Vista, Florida 32830 United States
Your Voice Will Make a Difference! Prader-Willi Syndrome’s First Externally Led Patient-Focused Drug Development Meeting will take place June 22, 2023 from 12:00 - 4:30pm EST both Virtually Via Zoom and In-Person at the Hilton Orlando Buena Vista Palace. CLICK HERE TO REGISTER TO ATTEND THE EL-PFDD MEETING VIRTUALLY The Prader-Willi Syndrome community is invited […]
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Support PWSA | USA During Kendra Scott’s PWS Awareness Month Giveback!
To close out a memorable and historic PWS Awareness Month, PWSA | USA is partnering with Kendra Scott for one final awareness celebration! The jewelry company will host a PWS Awareness Month Giveback event on Saturday, May 27, 2023, from 12:00 – 2:00 p.m. EST to support PWSA | USA’s advocacy, family support, and research […]
Better Speech and Hearing Month
The month of May is recognized as Better Speech and Hearing Month to bring awareness to the many speech, language, swallowing and hearing disorders among children and adults. Individuals with PWS often present with a variety of clinical features that may impact their speech and language development (Lewis, 2023) including reduced articulation, hypernasality or hypo […]
Fundraising Spotlight: AXES FOR HOPE
We are excited to share the upcoming Hope United fundraiser in New Mexico, benefitting PWSA | USA, AXES FOR HOPE! This great event is hosted by PWS parents and PWSA | USA parent mentors Jonathan and Maggie Andrews in New Mexico. Event Details When: Sunday, May 28, 2023 from 12:00 – 5:00 p.m. Where: ABQ Ax […]
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.