Are you planning to make a year-end gift? Giving Tuesday, which falls on November 29th this year, is the perfect opportunity to show your support! Thanks to the generosity of a group of anonymous donors, your Giving Tuesday donation and any donations made to PWSA | USA's Angel Drive through December 31, 2022, will be...
PWS sibling Austin, 14, has been using his new entrepreneurial skills to raise money for PWSA | USA and awareness for our rare disease community in honor of his sister Lola. How? By making and selling jam! Read below to find out how Austin came up with this idea, how much he has raised so...
Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too. November is recognized as National Family Caregiver Month....
Be a PWSA | USA Selfless Elf this holiday season and give the gift of Hope and Support to PWS families! Tell your family and friends that taking action for PWS is at the very top of your holiday wish list. Click the button below to sign up as a Selfless Elf, and start encouraging...
Join us for an Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD) at PWSA | USA's 37th National Convention, June 21-24, 2023! This is an FDA program and the first for our PWS community! On Thursday, June 22, 2023, in conjunction with our PWSA | USA National Convention in Orlando, Florida, PWSA | USA will host an...
As part of the NFL’s Annual ‘My Cause My Cleats’ campaign, Denver Broncos Safety Caden Sterns selected PWSA | USA as one of his charitable causes! My Cause My Cleats celebrates the positive impact that players have made in communities across America and provides players with an opportunity to highlight the cause-related work they are...
Due to the generosity of an anonymous donor’s gift, PWSA | USA is able to bring holiday cheer to families in need this holiday season! We will identify a select number of families to receive gift cards to be used to help ease the financial stresses of the holidays. To be considered, please fill out...
It has been said that each of us needs just three things to be truly happy in this world: someone to LOVE, something to HOPE for, and something to DO. Together with our Prader-Willi syndrome community near and far, our mission requires all three. WE LOVE: They are our children, our grandchildren, nieces, nephews, aunts, uncles, neighbors, patients, and friends...
This morning, PWSA | USA received new information from Harmony Biosciences regarding its Phase 2 study of pitolisant. This study's purpose is to evaluate the safety and efficacy of the drug in patients with Prader-Willi syndrome (PWS). The company shared the following community-facing statement: "Today, Harmony Biosciences announced topline data on the primary outcome, excessive...
Whatever holiday you and your family celebrate, PWSA | USA wants to help you make it both fun and safe. The key is to plan well ahead of time, incorporating the strategies outlined in this article. Celebrate Christmas Safely Many of these tips can carry over to other holidays celebrated during the winter months Replace those cookies...
by Katherine Crawford, former PWCF Family Support Coordinator Updated by Lisa Graziano, M.A., PWCF Education and Training Consultant Holidays are a time for gathering, connecting, and celebrating – but are also typically centered on food, which often places enormous stressors on families of a child or adult with PWS. We hope the following tips make...
Contributed by PWSA | USA's Family Support Team The Centers for Disease Control and Prevention (CDC) has shown an increase in Respiratory Syncytial Virus (RSV) infections in multiple areas of the US https://www.cdc.gov/rsv/index.html. RSV infection can cause a variety of respiratory illnesses in infants and young children. It most commonly causes a cold-like illness but...
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.