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Genetic Diabetes Experts from Around the World Gather for 2ND Annual Celebrating Miracles & Mileston

Discussion in 'Parents of Children with Monogenic Diabetes' started by Ellen, Jul 1, 2013.

  1. Ellen

    Ellen Senior Member

    Oct 22, 2005
    Genetic Diabetes Experts from Around the World Gather for 2ND Annual Celebrating Miracles & Milestones Family Forum

    By prAlliance, Community Contributor
    5:39 p.m. CDT, July 1, 2013

    The University of Chicago Medicine's Kovler Diabetes Center announces the 2nd Annual Celebrating Miracles & Milestones Family Forum and Professional Education Conference to take place on Wednesday, July 17th -Saturday, July 20th at the Chicago Marriott on Michigan Avenue. This event will feature updates on the latest research, diagnosis and management of monogenic diabetes, networking 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.

    Monogenic diabetes is a not-so rare form of diabetes representing about 2-3% of all diabetes cases. Caused by a mutation (genetic error) in any one of over 20 different genes, there are various forms including 'Neonatal' affecting children from birth to about 1 year of age and 'MODY' (maturity onset diabetes of the young) which is more common in adolescents and young adults but can appear at any age. All forms of monogenic diabetes are often misdiagnosed as type 1 or type 2 diabetes, so that approximately 500,000 people in the United States alone have no idea they have it. For those with monogenic diabetes, a correct diagnosis can often lead to simplified, improved treatment, awareness of problems and help others in the family who might have the same cause of diabetes. Professor Graeme Bell and Medical Center Dean, Dr Kenneth Polonsky, 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 who was first diagnosed with diabetes in 2001 when she was just one month old. Jaffe was treated at University of Chicago in 2007 and made medical history when she was one of the first children in the United States to be freed from insulin injections and correctly diagnosed with monogenic neonatal diabetes, instead of type 1.

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

    In 2010 the MODY Registry (also known now as the Monogenic Diabetes Registry) was created under the direction of Graeme I. Bell, Ph.D., Louis Philipson, MD, PhD, Siri Atma Greely MD, Ph,D 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," explains Philipson.

    Spontaneous genetic changes from one generation to the next occur fairly frequently but only rarely cause disease. If an individual has a mutated gene, this mutation could be passed from parents to their children. That is why some mutations can be found in several generations while other arise for the first time. Often doctors simply don't have the time to consider the family history and other features, so raising awareness of how one diagnoses all forms of diabetes is really important. The University of Chicago Kovler Diabetes Center will share the latest knowledge and expertise with families, individuals and health care professionals who need to know how to diagnose and treat monogenic diabetes.

    "I am looking forward to a spectacular University of Chicago meeting on genes and diabetes this July - it promises to be another amazing interaction for patients, doctors and scientists," explains Dr. Lou Philipson, medical director at Kovler Diabetes Center.

    The University of Chicago Medicine's 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. Established in 2006, the Kovler Diabetes Center has had a significant impact on the diabetes research, treatment and education around the world.

    For more information on monogenic diabetes or Celebrating Miracles and Milestones, please visit www.monogenicdiabetes.uchicago.edu or www.kovlerdiabetescenter.org/BeInspired or call 773.702.2371.

    on Twitter:
    Lou Philipson
    Director, Kovler Diabetes Center, University of Chicago
    Chicago ? kovlerdiabetescenter.org
  2. Judith

    Judith Neonatal Diabetes Registry

    Oct 30, 2005
    Monogenic forum

    I have arrived in Chicago and have already met some amazing people.

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