• Marfan Syndrome.
  • Marfan Syndrome and Related Disorders Education Days

    Join us on Friday, April 11th and Saturday, April 12th, 2014 for the Marfan Syndrome and Related Disorders Educations Days at Cincinnati Children’s Hospital Medical Center.

    The Marfan Syndrome and Related Disorders Education Days is a two-day event, bringing medical providers and patient families together to discuss Marfan syndrome and related disorders. Those in the medical community who are interested in Marfan Syndrome and related disorders are invited to take part in the Friday session while patient families are invited to take part in the session held on Saturday. Here, families will be able to meet and discuss pertinent issues that they face with medical providers along with other parents who are in similar situations.

    This event will be provided to patient families by the Heart Institute at Cincinnati Children’s at no additional charge. Please join us for this informative event.

    Friday, April 11th, 2014

    Those in the medical community who are interested in genetic heart conditions such as Marfan Syndrome.

    Speakers from the medical community will address several topics involving genetic heart conditions.

    Heart Institute Conference Room
    Building C, 4th Floor, Room 343
    Cincinnati Children’s Hospital Medical Center
    3333 Burnet Avenue
    Cincinnati, OH 45229
    *Guests may park in the free visitor’s garage

    Noon-1 pm: Registration
    1-5 pm: Speaker presentations

    Guests may park in visitor parking for this event.
    Please have your parking ticket validated during registration.

    Saturday, April 12th, 2014

    Patient families and the medical community who are interested in learning more about genetic heart conditions such as Marfan syndrome

    Patient family education day where speakers from the medical community will address topics related to genetic heart conditions such as diagnosis, treatment, and management of Marfan Syndrome.

    Sabin Auditorium
    Building D
    Cincinnati Children’s Hospital Medical Center
    3333 Burnet Avenue
    Cincinnati, OH 45229
    *Guests may park in free visitor’s garage.

    8-9 am: Registration/Breakfast
    9-11:30 am: Speaker presentations
    11:30am-12:30pm: Break/Lunch
    12:30-2 pm: Group Break Out

    Guests may park in visitor parking for this event.
    Please park in the areas marked Building D.
    Parking will be free for this event.

    Child Care

    All registrants will have the option to bring their children ages 1-10 years old to participate in the free, on-site, concurrent child care program. The Marfan Syndrome & Related Disorders Education Day is geared toward family members ages 11 and up so tweens and teens are encouraged to participate in the event. We will accept all children, with or without medical needs. Children in the child care program will rejoin family members for breakfast and lunch. Infants younger than 1 may stay with the parent(s) during the event. If you wish to utilize this service, please mark in the registration form that your child(ren) will be participating.


    There are many hotels near Cincinnati Children’s which will be the perfect fit for families attending this two-day event. However, special rates will be provided for attendees of this event at the Kingsgate Marriott Conference Center at the University of Cincinnati. Please see the following information below regarding reservations.

    Kingsgate Marriott Conference Center at the University of Cincinnati
    151 Goodman Drive
    Cincinnati, OH  45219
    Hotel Website

    Conference attendees can call 1 (800) 228-9290 or (513) 487-3800 on or before Friday, March 21, 2014, to make room reservations.  Please identify yourself as part of the CCHMC MARFAN Conference Room Block

    Area Attractions

    Cincinnati is chock-full of great attractions and things to do! If you have a few hours of down-time, explore all that the Queen City has to offer! View a complete list of attractions and events

    More Information

    For more information about the Marfan Syndrome & Related Disorders Education Days, please contact Amy Shikany, MS, Genetic Counselor at 513-803-3317 or by email ay Amy.Shikany@cchmc.org.

    Our thanks to The Marfan Foundation for their support of this event.

    The Marfan Foundation website logo.

  • Our Speakers


    Ronald V. Lacro, MD, is Director of the Cardiovascular Genetics Clinic and Marfan Syndrome Program at Children’s Hospital Boston, an Associate in Cardiology at Children’s Hospital Boston, and Assistant Professor of Pediatrics at Harvard Medical School. Board certified in pediatric cardiology and clinical genetics, Dr. Lacro works in the Non-Invasive Imaging Laboratory, specializing in echocardiography.


    Reed Pyeritz, MD, PhD, is the Chief of the Division of Medical Genetics, William Smilow Professor of Medicine, and Professor of Genetics at the Smilow Center for Translational Research at the University of Pennsylvania. Dr. Pyeritz, a founding member of the Marfan Foundation, also directs Penn CIGHT, the Center for the Integration of Genetic Healthcare Technologies. A current member of our Professional Advisory Board, he was its first chair when it was established in 1982.


    Stephanie Ware, M.D., Ph.D., F.A.C.M.G. is Program Leader in Cardiovascular Genetics; Professor in the Departments of Pediatrics and Medical and Molecular Genetics at Indiana University School of Medicine. She is board certified in Pediatrics and Medical Genetics. Her clinical activities are focused in the arena of cardiovascular genetics. In addition, she has a basic research laboratory with an emphasis on understanding the genetic and developmental basis of pediatric heart disease. She is an Established Investigator of the American Heart Association and a recipient of the Burroughs Wellcome Foundation Clinical Scientist Award in Translational Research.


    Loren F. Hiratzka, MD, medical director of Cardiac Surgery for Bethesda North Hospital, comes from a family of medical professionals. He received his first microscope at age 4 and there was never much question about the path he would take. Today, a nationally respected heart and lung surgeon, he specializes in heart valve repair and replacement as well as replacement of ascending aortas with aneurysms. Dr. Hiratzka has served on multiple committees for the American Heart Association, American College of Cardiology, and Society of Thoracic Surgeons. He has been instrumental in developing national guidelines on applying evidence-based practices for cardiovascular medicine and surgery. He is a prolific researcher and has written more than 100 articles, several on preventing the progression of cardiovascular disease, especially following surgery.


    Jennifer Buffone, LCSW, is currently the Senior Director of Support Services and Volunteer Development for The Marfan Foundation. Jennifer oversees all aspects of the Foundation’s Help Center and volunteer network. Jennifer organizes all programs for the Foundation’s Annual Family Conference including programs for adults, teens, and children. She has worked with the Foundation for 7 years. Prior to working at The Marfan Foundation, Jennifer worked in forensic mental health and substance abuse treatment for 10 years. Jennifer is certified in Dialectical Behavioral Therapy and teaches classes in individual counseling, group counseling, Cognitive Behavioral Therapy and Dialectical Behavioral Therapy at a peer counseling school.


    David Liang, MD, PhD, a cardiologist, is an Associate Professor of Medicine and the Director of the Stanford University Center for Marfan Syndrome and Aortic Disorders. A member of our Professional Advisory Board, Dr. Liang is dedicated to both taking care of patients with these disorders and conducting research to enhance treatment of the associated cardiac problems.


    J. Pablo Abonia, MD, provides the bulk of the clinical allergy care for patients with eosinophilic disease. He is currently involved in a multicenter clinical research trial of anti-IL5 (reslizumab) for patients with eosinophilic esophagitis. His research focuses on mining the research databanks (patient characteristics, tissue samples, RNA and DNA) to elucidate the mechanisms, diagnosis and treatment of eosinophilic esophagitis, and he is the Interim Director of the Registry for Eosinophilic Disorders (REGID). He is particularly interested in the role of mast cells in eosinophilic esophagitis.

    Virginia Miraldi Utz, M.D., F.A.A.P.

    Virginia Miraldi Utz, M.D., F.A.A.P, is an Assistant Professor of Pediatric Ophthalmology at the Abrahamson Eye Institute of Cincinnati Children’s Hospital Medical Center. Dr. Miraldi Utz specializes in the management of pediatric eye disorders such as amblyopia, strabismus, and pediatric cataracts.  She has special clinical and research interests in ophthalmic genetic disorders and ocular inflammatory disease.

  • Additional Information

  • Cardiovascular Genetics Program

    The Cardiovascular Genetics Program is part of the Heart Institute at Cincinnati Children’s. The program specializes in diagnosing and managing patients with heritable cardiovascular disease, such as congenital heart disease, and genetic conditions, such as Marfan and Noonan syndromes. READ MORE
  • Continuing Education Credit Available for Genetic Counselors

    The National Society of Genetic Counselors (NSGC) has authorized The Cincinnati Children’s Hospital Medical Center and The National Marfan Foundation to offer up to 0.4 CEUs or 4.0 contact hours (Category 1) for The Marfan Syndrome and Related Disorders Provider Education Day on Friday, April 11th. The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of certification and recertification.