On June 17, 2021, PWSA | USA and FPWR held a Patient Listening Session with the FDA to share our community’s experiences related to Prader-Willi syndrome (PWS). The purpose of this meeting was to promote dialogue between the FDA and members of the PWS patient community to ensure the FDA has a full understanding of...
Raffle Tickets are available for purchase NOW through Friday, June 25th at 12:00 p.m. EST. You can help send families to our 2023 National Convention by helping us raise funds for scholarships! Tickets are $20 and the winner will be announced during the Convention Closing Remarks on Saturday, June 26th. Purchase raffle tickets by modifying...
The 2021 PWSA | USA Online Convention Store is now open for business! We are excited to offer a wide variety of gear to kick-off this year’s National Convention. The Convention Store offers mugs, t-shirts, hoodies, a plush Panda stuffed animal, picture frames, coasters, infant onesies, and so much more! PLUS – We have launched...
We are pleased to announce that Dr. Moris Angulo M.D. has opened a new clinic, located in Bablyon, NY, and is accepting patients. Location: Center for Pediatric Specialty Care, 655 Deer Park Avenue, Babylon, NY 11702 To schedule an appointment, call 631-321-2100 ——————————————– Moris A. Angulo, M.D., was born in El Salvador, Central América and...
We request the flexibility afforded to other orphan indications when considering whether applications for treatments for PWS should be accepted for review. In a continuation of our joint advocacy efforts supporting the full review of potential drugs for PWS, FPWR and PWSA | USA have submitted a petition letter to the FDA requesting that they...
With your support, FPWR and PWSA | USA have been granted a meeting with the FDA, which will take place via teleconference later this month. This small, non-public meeting will allow FPWR and PWSA | USA to connect firsthand with the FDA staff and share important information that should be considered during the review of...
Jacob’s Story, as told by his mom, Teri: “Jacob is my 25 year old son with UPD PWS. Thankfully PWSA has been there for us since Jacob was born. We have definitely had challenges over the years. Those teenage years were filled with behaviors so we tried an ISL (independent supported living) in Kansas City,...
Many students with PWS and parents have faced many challenges over the years in educating and advocating for their right to a free and appropriate education. PWSA l USA staff have spent many hours developing handouts, participating in Individual Education Planning meetings and assisting families in addressing other educational concerns. In 2015, The Special Education...
Logging In to the Attendee Website: Step 1: Access the login page here. Step 2: Enter your info. You’ll be prompted to enter your first name, last name, and email address. Then click Next. Step 3: Verify your account. You’ll either receive an email and text message containing a verification code, or just an email. Read it, then...
Hunter’s Story, as told by his mom, Nicolette: “I am mom to Hunter who is almost 2 years old. We have made it through many ups and many downs over the last almost 2 years. When Hunter was born he spent 43 days in 2 different NICUs. He was born at a hospital that thankfully...
Virtual Medical & Scientific Convention Wednesday, June 23, 2021 | 11:15 a.m. – 12:15 p.m. Keynote Speaker: Deepan Singh, MD Topic: Behavior Problems in Prader-Willi Syndrome – What to Expect REGISTER HERE Dr. Deepan Singh is a board-certified child, adolescent, and adult psychiatrist, who currently serves as the Vice-Chair of Ambulatory Psychiatry Services at Maimonides...
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...
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.