In July, the University of Chicago Kovler Diabetes Center hosted the second conference in North America for individuals and families with monogenic diabetes, which was attended by almost 200 children and adults from throughout the world, followed by a Continuing Medical Education meeting for 120 physicians and health care professionals.
This conference highlighted the rare, genetic forms of diabetes that contribute to around 2% of all diabetes cases. Yet, it is believed that 90% of all individuals with monogenic diabetes are undiagnosed, which is between 100,000 to 300,000 individuals in the United States alone. For most individuals, a genetic diagnosis is transformative; it often leads to improved treatment (the ability to take oral medication instead of insulin injections) or eliminates the need for treatment altogether.
The University of Chicago has a proud history of producing the leading the research of genetic diabetes. Most of the key genes were discovered and evaluated by Dr. Graeme Bell, PhD, and Dr. Kenneth Polonsky, MD and Dean of the Pritzer School of Medicine. Dr. Andrew Hattersly, MD, and Dr. Frances Ashcroft, PhD, two distinguished guests from the UK that presented at the conference, have also contributed pivotal work to this area of study.
The meeting began on Wednesday evening, July 17 with the arrival of over fifty families with various forms of monogenic diabetes from numerous states and countries, including Alabama, Indiana, Ohio, Texas, California, Mississippi, Florida, Canada, Australia, England, and Argentina. This gathering of individuals and their families with so many unusual causes of monogenic diabetes was unprecedented and presented a rich opportunity for growth and learning, as well as meaningful social interaction between families impacted by these rare genetic mutations.
On Thursday morning, families with a lecture from world renowned professor, physician and researcher Andrew Hattersley, MD, who highlighted the impact individuals who have monogenic diabetes have had on his research over the years. “Patients have been central to all advances in monogenic diabetes. We would have found no genes without the help of patients,” he said. Later that day, in a press conference including Dr. Lou Philipson, MD, PhD, Director of the Kovler Diabetes Center, Rep. Tom Cross, Illinois House minority leader, and Rep. Jim Durkin, Governor Pat Quinn sited the opportunity this conference and those who participated impacted his concern for those with diabetes, and the signing of two new laws in Illinois that will support diabetes research. “More than 800,000 people in Illinois suffer from diabetes, more than double the number from 20 years ago,” Governor Quinn said. “It’s critically important that we continue to do everything in our power to raise awareness and support research by leading institutions like the University of Chicago Medicine.” Charlie Rotering, an 18 year old with Type 1 from Highland Park, Illinois, spoke about growing up with diabetes and overcoming many challenges along the way.
On Friday, Dr. Graeme Bell, who was recently awarded the Banting Medal for Scientific Achievement from the American Diabetes Association, gave a glowing presentation on the state of monogenic research.
Another highlight for attendees was an exclusive preview of a documentary on the discovery of monogenic diabetes and the impact it has had on one of our patients, Lilly Jaffe, who is now 13. The pilot was recently given the green light for full production from American Public Television, and will eventually be screened on PBS stations around the country. The meeting continued with a lecture from Prof. Fran Ashcroft, followed by panel discussions and additional breakout sessions with faculty.
Friday afternoon concluded with an after-hours visit and dinner at Lincoln Park Zoo, at which Dean Polonsky greeted attendees and the entire group came together for one last photo and a carousel ride.
Peggy Hasenauer, MS, RN and Executive Director of Kovler said, “We were so humbled by the opportunity to host an event that educates and inspires others, and we were honored by the attendance of so many families and medical professionals.”
For more information about monogenic diabetes, please visit our website: http://monogenicdiabetes.uchicago.edu/