It is with deep sadness that the Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) shares the passing of John “Jack” F. Kelly, who died peacefully on December 26, 2025.
Jack was a cornerstone of LGDA and a driving force behind its growth and endurance. Following the passing of his daughter, Jana Sheets, LGDA’s founder, Jack stepped forward to lead the organization as President and Executive Director, ensuring that Jana’s vision not only continued but strengthened. At a time when few resources, networks, or research efforts existed for Complex Lymphatic Anomalies (CLAs), Jack provided steady leadership grounded in compassion, determination, and an unwavering belief in the power of community.
Together with a small but committed cohort of families, Jack traveled tirelessly—visiting researchers, attending medical conferences, and advocating directly within the scientific and clinical communities—to raise awareness of CLAs and the urgent need for collaboration and research. These early efforts helped convene clinicians and investigators, laying the groundwork for the progress our field continues to make today.
In addition to his leadership at LGDA, Jack served on the Board of Directors for the Lymphatic Malformation Institute (LMI) — LGDA’s research partner — where he worked to expand awareness of lymphatic anomalies and support grant opportunities for researchers.
Jack’s influence extended across organizations, disciplines, and generations. Those who worked closely with him describe a leader defined by humility, perseverance, and a deep commitment to collaboration.
“Jack’s passion for partnership and research gave voice to families and investigators alike,” said Tiffany Ferry, President of the Lymphatic Malformation Institute and LGDA Board Member. “His dedication helped deepen the collaboration between LMI and LGDA, strengthening our shared mission to advance research and improve outcomes for all affected by lymphatic anomalies.”
“Jack’s devotion to this community was nothing short of extraordinary,” said Scot Wiesner, Board President. “He carried with him Jana’s mission and magnified it beyond what any of us could have imagined. His courage, humility, and dedication set a standard for all of us who follow.”
“Jack helped transform LGDA from a fledgling organization into a recognized leader in the rare disease space,” said Mike Kelly, MD, PhD, Executive Director. “His work opened doors, built partnerships, and created a path for research and care that continues to benefit patients and families every day.”
Jack’s leadership was deeply personal. He understood the realities faced by families because he lived them. His advocacy was shaped by loss, love, and an enduring commitment to ensure that no family navigating these rare and complex conditions would feel alone. Under his guidance, LGDA became not only an organization, but a trusted home for patients, families, clinicians, and researchers around the world.
The Board of Directors is profoundly grateful for Jack’s years of service, his mentorship, and his role in shaping LGDA into the organization it is today. His legacy lives on through the community he helped build, the research he championed, and the countless lives touched by his dedication.
Visit Jack’s obituary and details regarding his Celebration of Life.
Jack’s family is also planning a Zoom option for those who are unable to attend in person. Please refer to the obituary page above for the most current details and access information.
In lieu of flowers, Jack’s family has asked those who wish to honor his memory to consider making a contribution to the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), supporting the mission that meant so much to him.
We extend our deepest condolences to Jack’s family and loved ones. We will honor his memory by continuing the work he believed in so deeply and by carrying forward the mission he and Jana began.
With respect and gratitude,
The Board of Directors
Lymphangiomatosis & Gorham’s Disease Alliance (LGDA)
