Rare Disease Advocacy in Orlando
“On Rare Disease Day, I had the privilege of attending ‘Turning the Page on Prader‑Willi Syndrome’ in Winter Park, FL, to celebrate Dr. Destiny Pacha, an author, PWS education specialist, a friend and a true life‑changer for so many families in the PWS community. Hearing the story that began with her very first phone call about KP, a child with Prader‑Willi syndrome, and grew into tireless advocacy, education, and the creation of resources that now support families around the world, was both humbling and inspiring.
I am so proud of Destiny and the impact of her journey, and I was incredibly excited to finally meet KP in person, as well as see Klara, another amazing individual living with PWS, whose presence was a powerful reminder of why this work matters.
One of the moments that stayed with me most was seeing the book available in two different languages, opening doors for more families to feel seen and supported. The excitement grew even more with the announcement of two additional books on the way, signaling that this story, and this movement, is far from finished. It truly felt like a turning point: stories being shared more widely, voices being lifted higher, and the future of PWS awareness continuing to unfold with hope, purpose, and heart.”
Shared by Stacy Ward, PWSA | USA CEO
Rare Disease Advocacy in New Hampshire
On February 19, 2026, New Hampshire’s Rare Disease Advisory Council (RDAC) participated in a legislative lunch at the New Hampshire State Capitol to raise awareness about rare diseases and share priorities on state legislative issues impacting the rare community.
Proudly representing the PWS community, and showing her stripes, was Melanie Zalman (pictured on the right), PWSA | USA’s director of development and mom to 7-year-old Josie. Melanie volunteered with New Hampshire’s RDAC to help ensure rare voices were heard.
Did you know? Many states have a Rare Disease Advisory Council that provides input on policies affecting rare disease communities, though, not every state has one established yet. Getting involved can be a meaningful way to advocate locally.
Click the button below to learn more about RDACs and see if your state has one.
Rare Disease Advocacy through Podcasting
As Rare Disease Week unfolded in Washington, D.C., Elaine Towle helped bring the voice of our community to a national audience through a new episode of the Making Medicine Podcast.
In the episode, Elaine joined two others in the rare disease space to discuss the policies shaping the future of rare disease innovation. The conversation focused on how the current policy landscape may impact incentives for developing treatments for additional rare disease indications, and what that could mean for patients and families.
They also explored the goals of the Orphan Cures Act and its potential to sustain investment in therapies that serve small patient populations.
With rare diseases affecting an estimated 30 million Americans, and most still lacking an FDA-approved treatment, moments like this matter. You can listen to the full podcast episode at the button below.
Rare Disease Advocacy in Nebraska
In January 2025, a press conference was held at Nebraska’s State Capitol to address proposed changes to the state’s Aged & Disabled (A&D) Waiver (learn more about the press conference at the button below). The proposal would have reduced paid caregiver hours for parents of individuals ages 19+ from 112 hours per week to just 40. This cut could have forced many families to consider nursing homes or institutional care.
Paige Rivard, mom to Jake (15, living with PWS), stepped into action. Alongside two other advocates, she formed Nebraska Rare to amplify the voices of rare disease families across the state.
Through organized advocacy efforts and leadership in the press conference, their coalition made the case for why these hours are essential for families.
And the result? A reversal! As of February 6, 2026, the state announced it would maintain caregiver hours at 112 per week.
This is grassroots advocacy at its finest. Rare families coming together, speaking up, and creating real policy change. Paige’s leadership is a powerful reminder that when the PWS and rare disease communities raise their voices, they can protect critical supports and keep families together.
Rare Disease Advocacy Online
The World Economic Forum recently released a powerful new white paper, “Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity.” The report highlights the PWS community’s leadership in registry development and data-driven research (see Case Study 1), including recognition of PWSA | USA’s contributions.
We’re especially proud to share that the lead author of this global publication is Will Greene, dad to Arihai (4, living with PWS).
Will’s work represents rare disease advocacy at the highest level and highlights the importance of better data, stronger infrastructure, and greater investment to improve outcomes for families worldwide.
This recognition affirms the impact of the PWS community and reinforces our leadership on the global stage.
Click the button below to read the full white paper.
Have you reached an advocacy milestone this Rare Disease Day? We’d love to shine a light on it! Email communications@pwsausa.org with the details and photos so we can celebrate your impact and feature your story across our communications. Let’s raise awareness together!
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.
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.
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.
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.
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.