This July, the University of Chicago Kovler Diabetes Center hosted the second conference in North America for patients with monogenic diabetes, which was attended by over 50 families, followed by a Continuing Medical Education meeting for about 120 health care professionals.
This conference highlighted the rare, genetic forms of diabetes that contribute to around 2% of all diabetes cases. Yet, over 90% of all patients 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 with the arrival of over fifty families with various kinds of monogenic diabetes from numerous states and countries, including Illinois, Indiana, Ohio, Texas, California, Mississippi, Florida, Canada, Australia, UK, 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 Prof. Andrew Hattersley, MD, who highlighted the assistance his work has received from interaction with patients. “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 with Dr. Lou Philipson, MD, PhD, and director of the Kovler Diabetes Center, Rep. Tom Cross, Illinois House minority leader, and Rep. Jim Durkin, Governor Pat Quinn used the conference as an opportunity to sign two new laws 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.
The meeting then picked up again with lectures and interactive sessions led by members of the University of Chicago faculty. Child care was provided by a large dedicated staff – no easy task since many of the children are impaired in one way or another with neurodevelopmental issues.
On Friday, Dr. Graeme Bell, who was recently awarded the Banting Medal for Scientific Achievement from the American Diabetes Association, gave a presentation on the state of 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 a carousel ride.
The meeting was truly a unique experience. Staff and participants alike were moved by the truly inspiring advances in science that allow so many children and families to live insulin-free. Children and families with genetic diagnoses were able to bond with one another, forming relationships that will certainly endure beyond the scope of the conference. We are so humbled by the opportunity to host such a phenomenal event, and are 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/