Genetic diabetes experts gather for 'Celebrating Miracles & Milestones' Family Forum

Genetic diabetes experts gather for 'Celebrating Miracles & Milestones' Family Forum

July 18, 2013

The 2nd annual "Celebrating Miracles & Milestones: 2013 Monogenic Diabetes Family Forum," hosted by the University of Chicago Medicine's Kovler Diabetes Center, will take place on Wednesday, July 17, to Saturday, July 20, at the Chicago Marriott at 540 N. Michigan Ave.

The event will feature updates on the latest research, diagnosis and management of monogenic diabetes, networking opportunities for families with genetic forms of diabetes, and advanced medical and professional training. Attendees from all over the world will share their stories, learn from one another's experience with monogenic diabetes and participate in ongoing research activities.

Among the highlights of the forum will be a press conference at 10:30 a.m. Thursday by Gov. Pat Quinn and House Republican Leader Tom Cross.

"I am looking forward to a spectacular University of Chicago meeting on genes and diabetes," said Lou Philipson, MD, PhD, professor of medicine and medical director at Kovler Diabetes Center. "It promises to be another amazing interaction for patients, doctors and scientists."

Monogenic diabetes represents about 2 to 3 percent of all diabetes cases and is caused by a mutation in any one of more than 20 different genes. Monogenic diabetes comes in various forms, including neonatal, which affects children up to about 1 year old, and maturity onset diabetes of the young, or MODY, which is more common in adolescents and young adults but can appear at any age. Monogenic diabetes is often misdiagnosed as type 1 or type 2 diabetes. As many as 500,000 of the 25 million people in the United States with diabetes may be living with monogenic diabetes without knowing it. A correct diagnosis often leads to simplified, improved treatment, awareness of problems and help others in the family who might have the same cause of diabetes.

The University of Chicago Medicine's Kenneth Polonsky, MD, dean and executive vice president for medical affairs, and Graeme Bell, PhD, the Louis Block Distinguished Service Professor of Medicine and Human Genetics and an investigator in the Kovler Diabetes Center, played key roles in identifying and characterizing several causes of monogenic diabetes starting in the 1990s.

In 2008, Kovler launched a registry website for those with monogenic neonatal diabetes thanks to Lilly Jaffe, of Glencoe, who was diagnosed with diabetes in 2001 when she was a month old. Lilly was treated at the University of Chicago in 2007 and made medical history when she was correctly diagnosed with monogenic neonatal diabetes, instead of type 1, and became one of the first children in the United States to be freed from insulin injections.

"The real miracle is that this monogenic form of diabetes is most effectively treated with commonly used and inexpensive oral medication," said Laurie Jaffe, Lilly's mother. "This was absolutely life-changing for Lilly and our entire family and we consider it to be a true medical miracle."

In 2010, the MODY Registry was created under the direction of Bell, Philipson, Siri Atma Greely, MD, PhD, and Rochelle Naylor, MD, whose focus was to identify and follow those with monogenic diabetes, to raise awareness, improve diagnosis, and gather data to improve treatment. "We are interested in helping to correctly diagnose people with monogenic diabetes and these registries can make all the difference for research and treatment," Philipson said.

Established in 2006, the Kovler Diabetes Center is dedicated to continuing a tradition of excellence in clinical care, basic and clinical research, community engagement and education. Its mission is to deliver leading-edge care and develop innovative treatments and cures for individuals with diabetes throughout their lifespan.

The registration fee is $75 per family. For more information on monogenic diabetes or the "Celebrating Miracles & Milestones" event, please visit or call 773-702-2371.