Grateful for Connection, Community, and Momentum in Rare Disease Advocacy
This week I had the opportunity to attend the PPALS PACT 2026 Training Program again as part of Track II for Patient Advocacy Organizations. I left Sioux Falls feeling incredibly grateful, grounded, and reminded of how powerful community truly is in the rare disease space.
As someone who first came into advocacy as a parent and caregiver, these kinds of weeks carry a lot of meaning. They are not just professional development—they are deeply personal. Every session and every conversation circled back to the same core question: how do we better support patients and families while also moving research, understanding, and treatment forward?
One of the most meaningful parts of PACT was simply being in a room with others who understand this work. Advocacy often lives in both hope and heaviness at the same time. Many of us are navigating lived experience while also building organizations, supporting families, and trying to open doors in research and healthcare. There was a shared understanding that patient organizations are built from love, urgency, and lived experience—and that the patient voice must remain at the center of everything we do.
Throughout the week we explored important topics like research readiness, patient registries, nonprofit sustainability, working with industry, communication strategies, and the role of advocacy organizations in shaping rare disease research. While the content was broad, what stood out most to me was the reminder that families belong at the table. Our experiences are not separate from research—they are essential to it.
I especially valued the conversations around collaboration. In rare disease, no single organization or researcher can move things forward alone. Progress happens when families, clinicians, researchers, and industry partners work together with trust, respect, and shared purpose. That message gave me both hope and clarity for the continued work within the Lesch-Nyhan community and through Love Never Sinks.
2026 Ppals Pact Course Class
After PACT, I stayed through Thursday and Friday to attend the Rare Disease Summit hosted by Sanford. Those days were just as meaningful in a different way. I had the opportunity to meet so many people across the rare disease and research community, listen to others’ stories, share our own, and build new connections.
Love Never Sinks Table sharing information at the 2026 Great Plains Rare Disease Summit hosted by CoRDS
There is something powerful about sitting in a room where so many different diagnoses are represented, yet the emotions feel familiar—hope, frustration, determination, grief, and resilience. Hearing other families’ journeys reminded me that while each disease is rare, the experience of navigating rare disease often brings us together in shared understanding.
It was also a valuable opportunity to talk about Lesch-Nyhan Disease, raise awareness, and connect with researchers and advocates who are working across different areas of rare disease science. These conversations matter. Every connection helps build a stronger foundation for future collaboration, research opportunities, and ultimately better outcomes for families.
Ted greeting us for our Sanford Research Center tour
Tour of Sanford Research Center
Most importantly, experiences like this directly strengthen the work of Love Never Sinks. The knowledge shared at PACT, the relationships built at the summit, and the conversations happening across both spaces all help us better understand how to build stronger research partnerships, ask better questions, and position our community for future studies and clinical trial readiness. It also reinforces our mission to ensure families are not only supported but actively included in shaping the direction of Lesch-Nyhan research.
I am returning home with new relationships, new ideas, and renewed commitment to advancing research, collaboration, and family support through Love Never Sinks. Most of all, I am grateful—for the people, the stories, and the shared determination to keep moving forward together.