From PWSA | USA’s CEO, Stacy Ward, MS, BCBA
To our incredible PWS community,
As 2024 is coming to an end, I want to take a moment to just say thank you. I am so grateful to each of you for placing your trust in us and allowing us to walk alongside you during life’s most vulnerable moments. I recognize the courage that it takes to seek help and to share your story. Your trust is a profound gift, and it fuels our commitment to provide compassionate care, resources, and support to those who need it most. Thank you for allowing us to be a part of your journey, for inspiring us every day, and for being an essential part of our mission.
Together, we’re creating a community of resilience, hope, and healing. Your support and generosity over the past year has made an incredible impact, and we couldn’t do what we do without you. Thanks to you, we’ve been able to accomplish so much and touched so many lives.
I’m excited to share some of the highlights from this past year, which were all made possible by supporters like you.
Important Milestones in 2024
*PWSA | USA provided guidance, education, and support to more than 4,000 families, educators, physicians, and service providers.
*We’ve also partnered with 16 states to advocate for PWS to be recognized as a syndrome in order to get waiver services, regardless of IQ.
*This past May, we hosted our second D.C. Fly-In. This event tripled in participation compared to 2022.
*We’ve had countless meetings with elected officials and FDA staff to advance both policy and drug development in PWS. Most recently, we were integral to the creation of the FDA Rare Disease Innovation Hub.
*In August, we hosted the first stand-alone PWS Residential Provider Conference, with more than 100 providers in attendance.
*We’ve also provided training to more than 100 schools and residential providers.
*We worked closely with Soleno Therapeutics and the PWS Advocacy Coalition on the submission of the New Drug Application (NDA) to the FDA for a potential treatment targeting hyperphagia in individuals with Prader-Willi syndrome. This marks a critical step toward addressing one of the syndrome’s most challenging symptoms. The FDA has set a target PDUFA date of March 27, 2025.
*We began shipping heartfelt care packages to newly diagnosed families and parents grieving the loss of a loved one with Prader-Willi syndrome. These packages provide comfort, resources, and a reminder that you’re never alone.
*We also, this year, launched our first podcast, PWS United, which has been wildly successful. This media form has allowed us to enhance the education and the support we are providing to all families in the PWS space.
*One of my personal proudest moments was hosting the Adults-with-PWS Advisory Board meeting in person for the first time since 2020. During this meeting, adults with PWS came together and shared their vision for PWSA | USA, their hope for PWS treatments, and most importantly, their desire to be heard as individuals. Moments like this remind us why we do the work that we do and how meaningful your support truly is. Learn more about the members HERE.
Looking ahead to 2025, we’re excited to continue building on this momentum.
*We will usher in the 50th anniversary of PWSA | USA and host the “Journey of Hope” Gala in September 2024 (more details coming soon!).
*We will be partnering with IPWSO and FPWR on the 2025 International PWS Conference, being held June 24-28, 2025, in Phoenix, Arizona. This historic event is the first time all three PWS organizations will host a conference together!
*We will be launching our new Parent Training Series, Empowering Families and IEP Meetings, led by Dr. Destiny Pacha, ED.D. This comprehensive series is designed to equip parents with the tools and strategies needed to advocate confidently for their children during IEP meetings, ensuring their unique needs are met.
*We will also partner with the Chicago School of Professional Psychology and Dr. Kasey Bedard, PhD, for different projects, ranging from teaching individuals with PWS emotional regulation skills to mentoring and training behavior analysts working with individuals with PWS.
We also have many new advocacy initiatives and programs starting, including the Advocacy Ambassador Program and Parent Advocacy Training Series.
There is even more in store, and we can’t wait continue growing our support services for individuals and families in the PWS community.
With our deepest and sincerest gratitude
None of this would be possible without your ongoing support. Thank you again for standing with us, for believing in our mission, and for supporting us.
PWSA | USA’s 2024 Angel Drive Campaign ends on December 31st. Every contribution made, no matter the size, brings us closer to a vision where people with PWS are living the lives that are meaningful to them.
We’re so lucky to have a dedicated PWS community of supporters. Together, we’re making a difference in the lives of those affected by PWS.
Sincerely,
Stacy Ward, MS, BCBA
PWSA | USA CEO
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.