Northwestern Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago to Host 28th Annual National Marfan Foundation Conference, August 2-5, 2012

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Record Number of Attendees Includes More Than 100 Teens and 100 Children with Marfan Syndrome or a Related Disorder

Watching the kids and teens meet and make immediate connections at the conference each year brings tears to my eyes. Although they may have never met before, they feel like they finally fit in and can be themselves.

Northwestern Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago are co-hosting the 28th Annual National Marfan Foundation (NMF) Conference on August 2-5, 2012. The NMF Annual Conference enables people with Marfan syndrome and related connective tissue disorders, and their families, to meet leading Marfan syndrome researchers and physicians and learn about new medical and genetic research firsthand. This conference has a record number of attendees, with nearly 550 registrants, including 100 teens and 100 children, ages 5-12. This marks the first time that the NMF’s annual conference is being held in downtown Chicago.

    Spearheading the conference for the host institutions are Dr. Chris Malaisrie, cardiovascular surgeon, and Dr. Marla Mendelson, cardiologist, who are co-directors of the Marfan syndrome clinic at Northwestern Medicine, and Dr. Luciana Young, cardiologist, and Dr. Barbara K. Burton, medical geneticist, who are the co-directors of the Lurie Children’s Connective Tissue Disorder Clinic.

    “The NMF Annual Conference gives affected people and their families an opportunity to learn about Marfan syndrome and related disorders and connect with other people who have these conditions,” said NMF President and CEO Carolyn Levering. “In addition, we offer a free patient evaluation clinic for attendees, particularly those who don’t have access to Marfan syndrome experts at home. This is a unique offering among patient conferences that is literally life-saving for so many.”

NMF Conference has Family Focus

    The NMF Annual Conference begins with the evaluation days on August 2-3 when people who have a diagnosis or suspect that they have Marfan syndrome or a related connective tissue disorder can be evaluated by medical experts from all over the country (by appointment only). General conference sessions are on August 4, with medical presentations and a panel discussion led by researchers and physicians who have special expertise in Marfan syndrome and related disorders. They will address a range of topics, including cardiac, orthopedic and ocular issues, as well as the latest research news.

    After the general plenary session, conference attendees can attend small-group workshops about specific medical concerns led by physicians and other medical professionals. On August 5, workshops about psycho-social concerns will be offered.

    The teen program and children’s program are bigger this year than ever before. Fun, age-appropriate activities are planned for each group; however, the true value of the conference for the NMF’s young members is related to their self-esteem, peer support and opportunity to make friends with others who face the same medical challenges.

“Watching the kids and teens meet and make immediate connections at the conference each year brings tears to my eyes” said Jennifer Buffone, LCSW, NMF Director of Support Services and Volunteer Development “Although they may have never met before, they feel like they finally fit in and can be themselves.”

    To hear from teens themselves about the value of the conference, please watch this video.

NMF Scholarships

    To make it easier for affected individuals and families, the NMF offers conference scholarships, which are funded by the NMF membership through three funds: the Heaney Angels Fund, Weiss Scholarship Fund and Julie Kurnitz Memorial Fund. Awards are based on financial need and priority is given to those who do not have access to specialty Marfan care at home and who have never attended an NMF Conference before.

    The National Marfan Foundation is grateful for the generous support of the conference from 3 Points LLC, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chris Heaney, Neuco, Inc., Northwestern Medical, NMF Northern Illinois Chapter, Paramount Tall Club of Chicago and Tall Clubs International.

Marfan Syndrome and the National Marfan Foundation

    Marfan syndrome is a potentially fatal genetic disorder of connective tissue. Marfan syndrome and related connective tissue disorders affect approximately 200,000 Americans. Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with Marfan syndrome and several of the related disorders experience an expansion of the aorta. Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death.

    Studies about the increased life expectancy for people with Marfan syndrome provide great hope and optimism, but only through increased awareness, earlier diagnosis and proper treatment can people with the disorder expect to live a normal life span.

    The NMF was founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to support and foster research.

    To obtain additional information about the conference and to register, please call the NMF at 800-8-MARFAN or visit the NMF on line at

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Eileen Masciale
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