More than 50 of the world’s leading experts in beta cell replacement—a therapy being developed to treat type 1 diabetes (T1D)—had the exceptional opportunity a few weeks ago to meet some people living with T1D for whom their work is step toward insulin independence. The investigators were attending the JDRF Encapsulation Consortium (JEC) meeting in Boston, MA, where the latest research and clinical developments in beta cell replacement techniques and technologies were being discussed.

Launched in 2013, JEC brings together prominent researchers from an array of disciplines in fields as diverse as beta cell biology, device engineering and materials science to work collaboratively to advance beta cell replacement as a viable therapy for T1D. This fall meeting offered scientific sessions on Macro-encapsulation Strategies and Device Design; Industry Research Landscape; Micro-capsule Development and Clinical Study Project Updates, in addition to the first-day session “Personal Stories of Living with T1D” led by Marjana Marinac, JDRF’s Senior Director of Regulatory and Health Policy.

Session attendees heard from Ann Marie Kreft, daughter to one person with T1D and mother of another, who told the audience about the similarities and differences between the regimens followed by her late father and now 16-year-old son. Ms. Kreft said her father, a baseball fan who worked as an accountant for the Cincinnati Reds, relied on a primitive early version of blood sugar “score keeping” using daily urine tests, insulin injections and dietary restrictions, back-stopped only by a roll of Lifesavers in his shirt pocket in case of a sudden hypo as tools for managing his disease. He died when Ms. Kreft was a senior in high school when his body rejected a kidney transplant. Decades later, her son practices what Ms. Kreft calls “extreme diabetes scorekeeping,” using insulin pumps, continuous glucose monitors, high-tech syringes and dosing pens as well a selection of data management and sharing systems to help him stay in control.

While Ms. Kreft told her audience that the availability of the new tools makes it easier for her son to manage his disease, the “extreme diabetes scorekeeping can also be annoying, exhausting, and discouraging. The never-ending stream of data” generated by her son’s T1D systems “has transformed daily communications,” she said. “In my lifetime, the disease that used to generate little-to-no discussion now risks monopolizing all discussions, albeit for good reasons. “

She told the researchers that thanks to their work and that of other T1D scientists, she is looking forward to the day when she and her family are able to “eliminate the need for diabetes scorekeeping.”

Another speaker, Norma Stephenson, told the audience about the relentless nature of T1D that threatened her life and that of her unborn daughter during her first pregnancy, subsequent complications that eventually led to a kidney transplant, and finally, an islet cell transplant that has allowed her to abandon insulin therapy altogether. “The physiological and psychological effects of being a ‘healthy person’ and not having a chronic illness that I have to treat all day, every day has had a huge effect on my well-being and outlook,” she said. Norma told her audience that she was “so thankful for this gift and the opportunity to live insulin and complication-free for any amount of time” and reminded them that “it’s so important that the research continues.”

Several of the researchers in the audience, including Mark Poznansky, M.D., Ph.D., Director, Vaccine and Immunotherapy Center, Massachusetts General Hospital, said the speakers’ stories drove home the importance of their work. “The inclusion of personal stories of living with type 1 diabetes was enormously impactful,” he said. “It helped emphasize how we must sharpen our focus as physicians and scientists on accelerating the development of new therapeutic and potentially curative technologies for individuals suffering from this condition.” Melanie Graham, MPH, Ph.D., an Associate Professor in the Department of Surgery at the University of Minnesota, said “These stories remind us exactly why we continue to drive towards a cure. I feel deeply inspired, as a scientist who is dedicated to finding a cure for this disease, by their energy and willingness to be a partner in this research.”

“This session at the JEC was a great opportunity to bring these impactful, real life stories of T1D to researchers,” said session leader Marjana Marinac. “We look forward to continuing to bring the patient voice to the scientific community.”