This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Category: Event
Journey of Hope Gala Honoree Spotlight: Jim Kane
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Vanja Holm
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Lota Mitchell, MSW
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Jim and Joan Gardner
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Janalee Heinemann
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD
For more than three decades, Dr. Moris Angulo, MD, has been a tireless champion for people with Prader-Willi syndrome (PWS), in exam rooms, at conferences, across continents, and in the hearts of the families he serves. Born in the small town of El Tránsito, El Salvador, Dr. Angulo’s journey to becoming a board-certified pediatrician, medical...
Journey of Hope Gala Honoree Spotlight: Gene & Fausta Deterling
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12...
You’re Invited: Celebrate PWSA | USA’s 50th Anniversary at the Journey of Hope Gala
Here’s Your Next Opportunity to Gather Together In-Person with the PWS Community! Celebrate PWSA | USA’s 50th Anniversary in St. Louis, MO Learn More and Purchase Gala Tickets After experiencing an amazing time together in Phoenix at the United in Hope International PWS Conference, we’re reminded how meaningful it is to gather in person –...
Zahra’s Night of Light Shines Bright!
What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY. The evening brought together family and friends for a beautiful celebration benefiting children like Zahra who are living with Prader-Willi syndrome. Guests enjoyed live entertainment, delicious...
Free Live Webinar: Understanding VYKAT XR – The First FDA-Approved Treatment for Hyperphagia in PWS
Date: Wednesday, April 16, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM The Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families, caregivers, and healthcare providers understand what...
New for PWS Awareness Month: Host a United We Brunch!
May is Prader-Willi Syndrome (PWS) Awareness Month—a time to amplify voices, celebrate resilience, and rally support for those affected by PWS. This year, we’re launching United We Brunch, a nationwide movement bringing people together to raise awareness and strengthen our community. Whether it’s a small gathering or a large event, every brunch hosted across the...
A Legacy of Love: The Story Behind the Hot Stove Dinner and Its Impact on the PWS Community
As we prepare for the 11th Annual Hot Stove Dinner—happening Saturday, March 22, 2025, at the Bradenton Country Club in Bradenton, FL, and online for virtual guests—event host Clint Hurdle takes us on a journey through the event’s history. Originally shared with PWSA | USA in 2022, Clint’s heartfelt reflection, A Legacy of Love, tells...
Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year
As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion. Our story began in 1975, when Gene and...
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...