Category: Event
Help PWSA | USA Turn Hope into Action: Support the 2024 Angel Drive Campaign
Give the Gift of HOPE This Holiday Season! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity. Click Here...
A Night to Remember: The 2024 Clint Hurdle Hot Stove Dinner
The 10th Annual Clint Hurdle Hot Stove Dinner was an extraordinary success, held at the Bradenton Country Club in Bradenton, FL, on March 23, 2024. Hosted once again by the dedicated Clint and Karla Hurdle, the evening was a testament to the power of community. The Hurdles, who have a 21-year-old daughter, Madison, living with...
Rare Disease Advocates Will Unite in Washington, D.C., to Celebrate National Prader-Willi Syndrome (PWS) Awareness Month, National PWS Awareness Day
May 8, 2024 (Washington, D.C.) — Prepare for a powerful convergence in the heart of Washington, D.C., on May 15th as advocates for individuals living with Prader-Willi syndrome (PWS) gather for PWSA | USA’s important advocacy event, the D.C. Fly-In. This year marks the 2nd National PWS Awareness Day, a significant milestone achieved through the...
2025 International PWS Conference Announcement!
PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 at the Arizona Grand Resort & Spa in Phoenix, Arizona! The conference theme, “United in Hope”...
New PWS Clinical Study: Free Informational Webinar with Harmony Biosciences
Join PWSA | USA and the team from Harmony Biosciences on Tuesday, March 12th at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the upcoming Phase 3 registrational TEMPO study, a randomized, double-blind, placebo-controlled, multicenter, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS,...
2024 D.C. Fly-In Application Now Available!
Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 2nd D.C. Fly-In, which will take place May 13 – 15, 2024, is now available. Find important disclaimer information by scrolling below, including what expenses PWSA | USA will be covering. This year’s event hotel...
Here’s How YOU Can Support PWSA | USA’s Advocacy Initiatives in 2024
We can continue to make our voices and our stories heard through advocacy and community outreach. On January 16, 2024, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS, but they will raise much needed funds to enable...
2024 DC Fly-In Hotel Announcement and Application Release Date
We are excited to share PWSA | USA's 2nd D.C. Fly-In will take place May 13-15, 2024, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW, Washington, DC 20001)! During the Fly-In, we will learn about Policy affecting the PWS community, hear from policy makers, and continue our...
YOU Can Help Make an Impact by Giving Twice the Good on Giving Tuesday
Are you planning to make a year-end gift? Giving Tuesday, which falls on November 28th this year, is the perfect opportunity to show your support! Thanks to the generosity of a group of anonymous donors, your Giving Tuesday donation made to PWSA | USA's Angel Drive will be MATCHED dollar for dollar up to $15,000. Make a...
Give the Gift of Hope During PWSA | USA’s 2023 Angel Drive Campaign!
As children, we always remember our favorite gifts bestowed at holiday times: a shiny red bike, a beloved doll, a new baseball glove. These gifts and the loved ones who gave them to us are forever etched in our memories now and always. As the holiday season begins and the new year approaches, PWSA | USA is...
Joint Announcement: FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS
PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created...
2023 Moms’ Retreat Attendees Selected!
Thank you to everyone who submitted an application to attend PWSA | USA's first-ever Moms' Retreat, October 12-15, 2023, in Palm Spring, California! On Friday, August 18, 2023, 30 applicants were randomly selected to attend the event. Our staff will be reaching out to these individuals to provide additional details and collect information. Below you...
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...
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...
Introducing PWSA | USA’s ECHO® 4 PWS Healthcare Provider Series
PWSA | USA is excited to announce the launch of our new Healthcare Provider Project ECHO Series on May 16, 2023, at 5:00 p.m. CST. We are proud to offer this opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO®...
Do You Have Questions About the 37th National Convention? We Have the Answers!
Join with several members of PWSA | USA's staff Tuesday, February 21, 2023 at 8:00 p.m. EST to learn the ins and outs of our 37th National Convention! We are excited to share more details and answer questions about this year's Convention events, speakers, opportunities for families, caregivers, and health professionals, and how you can...
Advocacy in Action Webinar: Arizona State Qualifier Campaign
When: February 16, 2023 at 8:00 p.m. EST Register TODAY for PWSA | USA's free February Advocacy in Action webinar, where several PWSA Arizona Chapter leaders will discuss the Arizona State Qualifier Campaign. PWS is only recognized in 14 States as an automatic qualifying condition. Join us as we bring you the leaders of our...
Save the Date: 2023 Clint Hurdle Hot Stove Dinner
Tickets for the 2023 Clint Hurdle Hot Stove Dinner (March 25, 2023) will be available for purchase on Tuesday, January 17, 2023! SAVE THE DATE for the 2023 Clint Hurdle Hot Stove Dinner, which will take place Saturday, March 25, 2023. Sip, savor, and support Prader-Willli Syndrome Association | USA while enjoying this outdoor event...
PWSA | USA 2023 Convention Registration is NOW OPEN!
Registration is NOW OPEN for PWSA | USA’s 37th National Convention! 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. This...
Celebrate the Season of Giving by Becoming a PWSA | USA Selfless Elf
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...
PWSA | USA to Host FDA Sponsored Program at 37th National Convention
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...
Operation Holiday Cheer Applications Now Being Accepted
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...
Share Hope + Take Action During PWSA | USA’s 2022 Angel Drive Campaign!
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,...
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.