The National Urea Cycle Disorders Foundation (NUCDF) was proud to host the 2026 NUCDF Family Conference in Memphis, Tennessee, in collaboration with Dr. Andrea Gropman and the Pediatric Translational Neuroscience Initiative at St. Jude Children’s Research Hospital.
Guided by the theme Bridge to the Future, the conference brought together families, researchers, clinicians, advocates, and industry partners from across the UCD community for a powerful exchange of knowledge, connection, and hope. Together, we built bridges between families and experts, research and clinical care, childhood and adulthood, and today’s challenges and tomorrow’s possibilities.
The conference highlighted advances in UCD diagnosis, treatment, and research while centering the lived experiences of patients and families. Leading UCD experts shared current information, answered questions, and connected directly with the community. Families also shared their experiences and helped researchers better understand the priorities, challenges, and hopes of those living with UCDs.
One of the most powerful parts of the conference was seeing so many young adults living with UCDs pursuing college, building careers, living independently, and creating futures that once seemed out of reach. Their stories reflected the extraordinary progress our community has made and offered a glimpse of what is possible for future generations.
Attendees also heard about exciting advances in UCD research, including the story of KJ Muldoon, the first person to receive a personalized gene-editing treatment for severe CPS1 deficiency. Having KJ, his family, and Dr. Rebecca Ahrens-Nicklas with us reminded everyone that the future of UCD care is already beginning to take shape.
The conference also highlighted NUCDF’s growing partnerships in emerging research. These included an ARPA-H-supported initiative led by Dr. Ahrens-Nicklas to advance personalized gene-editing therapies and the NIH-funded CONNECT initiative with Case Western Reserve University. Through these collaborations, NUCDF is helping ensure that patient and family perspectives remain central to conversations about research, ethics, access, and the future of treatment.
In addition to educational sessions and community gatherings, attendees enjoyed a Saturday evening bowling and dinner event—a joyful opportunity to celebrate our community, create new friendships, and strengthen the bonds that carry us forward.
For nearly 40 years, NUCDF has been built on one simple belief: families come first. The 2026 Family Conference brought that belief to life as researchers brought discovery, families brought lived experience, and every voice helped shape what comes next.
We were honored to welcome the UCD community to Memphis as we connected, learned, and built the bridge to the future together.
The 2026 NUCDF Family Conference was held at the Hyatt Centric Beale Street in Memphis, Tennessee. Located steps from Beale Street and minutes from the Mississippi River, the hotel provided a welcoming setting for families, friends, colleagues, and experts to connect and experience the city together.
26 NUCDF Conference Program
