Earlier this month, five members of the PWSA | USA team (and Josie – Melanie Zalman’s 7-year-old daughter who is living with PWS) traveled to Pittsburgh, PA, for a special visit to PANTHERx Rare Pharmacy’s headquarters. PANTHERx is the dispensing pharmacy for the FDA-approved treatment of hyperphagia in PWS. The visit offered PANTHERx staff the chance to hear directly from PWS caregivers about the day-to-day realities of living with PWS and learn more about PWSA | USA. What followed were powerful conversations, emotional connections, and a shared commitment to supporting the PWS community with compassion, expertise, and heart. Below, each staff member reflects on the experience in their own words.
"Earlier this month, I had the chance to travel to Pittsburgh with several members of the PWSA | USA team to visit PANTHERx Rare, the dispensing pharmacy for the FDA-approved treatment of hyperphagia in PWS. I expected a tour. What I experienced was something far more meaningful.
We started at PANTHERx’s distribution facility, walking through every stage of how the treatment will reach our families. We watched the careful steps — temperature controls, packaging checks, quality verification, and personalized support planning — and felt the weight of how many hands and how much detail it takes to deliver one medication to one child.
Later, we visited PANTHERx’s corporate offices and met the team members who may never meet our families in person but will change their lives all the same: pharmacists, clinicians, insurance support staff, logistics specialists, and everyone who plays a role in access and patient care. These are the people who will help navigate coverage fights, support anxious parents, and ensure consistency in a medication our community has waited decades to see.
Then came the moment that mattered most to me: sharing what life with PWS truly feels like. I talked about my son. About the routine, the vigilance, the heartbreak of hyperphagia, and the hope this treatment represents — not as a concept, but as a lifeline. We didn’t really speak as staff members or advocate, we spoke as mothers. What struck me most was how PANTHERx responded. They listened. They asked questions. They cared. One by one, we connected with nearly every employee who will “touch” the hyperphagia treatment. It wasn’t transactional — it was human.
I left Pittsburgh grateful. PANTHERx isn’t simply distributing a therapy; they are partnering with our families, honoring our lived experiences, and taking on this responsibility with empathy. This treatment is more than a medication. It’s a milestone. And I’m thankful to have met the people helping make it real for the Prader-Willi community — including my child."
"Visiting PANTHERx Rare Pharmacy was a deeply meaningful experience. Sharing my personal experiences as a PWS caregiver allowed their team to better understand what patient families are facing every day, so they can provide truly responsive support. Seeing their kindness and compassion with Josie—who helped put a face to the patient journey and the realities of hyperphagia—was incredibly moving. Having PANTHERx’s “rare care” team in a family’s corner when navigating challenges like insurance hurdles or important calls with providers can be game-changing. PWS caregivers are used to fighting for everything, and having someone roll up their sleeves alongside you can make all the difference. At the end of our presentations, members of the PANTHERx team were moved to tears, asked meaningful questions, and genuinely wondered, 'What more can we do to support PWS families?' We can’t ask for more than that."
"The PANTHERx trip highlighted just how special the rare community is to me. The entire team at PANTHERx truly demonstrates a deep passion for supporting individuals with rare conditions and providing services that go far beyond traditional pharmacy care. I learned that there is a real distinction between a specialty pharmacy and a rare pharmacy. A rare pharmacy offers a highly customized, relationship-based experience that extends well beyond simply filling a prescription. At PANTHERx, their team provides 24-hour phone support and includes pharmacists, nurses, and technicians who not only understand Prader-Willi syndrome but also the hyperphagia treatment. They are also equipped to help families navigate insurance challenges, including appeals—something that can make or break access for our children.
During the visit, the entire team listened with genuine interest as we shared what it means to be a parent of a child with PWS—the good, the bad, and everything in between. They listened as we described the difficulties families often face with other pharmacies and the exhausting appeal processes we endure while waiting for essential medications. Panther truly impressed me with their efficiency, expertise, compassion, and willingness to learn from our community. Seeing how their process flows—from prescription arrival to final delivery—was both reassuring and encouraging. Thank you to everyone at PANTHERx for the incredible tour and for your commitment to serving the rare community with such dedication and heart."
"The visit to PANTHERx Rare Pharmacy was truly unforgettable. Their branding and logo immediately stood out, so thoughtful and polished, but it was their warmth and genuine hospitality that really made an impact. What moved me most was their deep desire to understand the lived experience of people with PWS. As we shared stories, you could feel how much it resonated, and seeing both their team and ours brought to open tears is something I’ll never forget. One of the most touching moments was watching them embrace Josie, Melanie’s 7-year-old daughter living with PWS - the kindness, curiosity, and compassion they showed her spoke volumes. It was a beautiful reminder of the heart behind this work and the power of true connection."
"What an inspiring trip! From the moment we arrived to the moment we left, we were welcomed with open arms by everyone we met. We had the opportunity to share meaningful insight about Prader-Willi syndrome with dozens of people who hadn’t previously been familiar with the day-to-day realities faced by individuals and families. Every conversation felt attentive and genuinely engaged. I echo Stacy’s reflection about the emotional reactions we saw in the room — they resonated deeply with all of us. The parents on our staff who were there (Melanie, Dorothea, and Lynn) shared powerful, heartfelt testimonies about what life is like caring for a loved one with PWS and how it touches every facet of their lives. As someone who is not a parent to a loved one with PWS, these in-person trips always expand my understanding too. This visit helped me feel even more connected to our team and to the community we serve. Emotions ran high throughout the day, but in a way that left us feeling encouraged and confident that our message made a difference. A sincere thank you to the PANTHERx team!"
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.