Contact: Eileen Masciale
             Consulting Director of Communications
             631-665-2163
             publicity@marfan.org

             Julie Moenck
             Public Affairs, Mayo Clinic
             507-284-5005
             moenck.julie@mayo.edu


PORT WASHINGTON, NY, JULY 13 — Mayo Clinic in Rochester, Minnesota, is hosting the 25th Annual National Marfan Foundation (NMF) Conference on August 6-9, 2009. 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 is the first time that the NMF Annual Conference will be held in Rochester.

            Heidi Connolly, MD, a cardiologist, and Thoralf Sundt, MD, a cardiovascular surgeon, are spearheading the conference initiative at Mayo Clinic. Dr. Connolly is among a select group of doctors and researchers who serves on the NMF’s Professional Advisory Board.

            Amy Yasbeck, the widow of the popular actor John Ritter, will give the keynote address at the NMF’s Awards Dinner at Mayo Clinic on Saturday, August 8. Since Ritter’s death from an aortic dissection in 2003, Yasbeck has been outspoken about the need for increased awareness of the signs and treatment of aortic dissection. This is also a top concern of the NMF as people with Marfan syndrome are at an increased risk of aortic dissection – up to 250 times more than the general population.

            Approximately 500 individuals, primarily affected people and their families, are expected to attend the conference to learn about Marfan syndrome and related disorders and network with other people with these conditions.

            A special patient assessment clinic will be held at Mayo Clinic, giving people who do not have access to medical experts on Marfan syndrome at home an opportunity to be evaluated by leaders in the field from Mayo Clinic and other leading Marfan syndrome clinics around the country. The clinic will be held on August 6-7, with medical presentations, workshops and networking opportunities being held on August 8-9.

“It is wonderful to bring the NMF Annual Conference to Mayo Clinic, which is world-renowned for its long history of excellence in patient care and medical research,” said NMF President and CEO Carolyn Levering. “We are extremely grateful to the hard-working volunteers of the NMF’s Twin Cities Chapter and Heart of Iowa Chapter who have taken a lead role in organizing the conference, including the state fair-themed welcome event that showcases Midwestern hospitality.”

NMF Conference has Family Focus

            The NMF Annual Conference begins with Marfan syndrome evaluation days on August 6-7, 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 8, 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 various aspects of Marfan syndrome, including current research, genetic testing, options in aortic surgery, orthopedic challenges, conditions related to Marfan syndrome and more.

            On that day, the conference will also offer small-group workshops where attendees can discuss specific medical concerns with physicians and other medical professionals. On August 9, workshops about psycho-social concerns will be held. 

            Nearly 60 individuals and families who requested a NMF Conference Scholarship have been given awards that total close to $30,000 to offset the cost of attending the event. Conference Scholarships 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 have never attended an NMF Conference before.

            The National Marfan Foundation is grateful for the generous support from the Twin Cities and Heart of Iowa NMF Chapters, Dr. Scholl Foundation, Loeys-Dietz Syndrome Foundation, Mayo Clinic Rochester, Mayo Clinic Marfan and Thoracic Aortic Clinic at Mayo Clinic Rochester, Medtronic's Spinal & Biologics Business and Medtronic CardioVascular, which helped make this conference possible.

Mayo Clinic is a Leader in Marfan Syndrome Research

             Since 1959, more than 3,600 patients from all walks of life have found answers to Marfan syndrome-related questions at Mayo Clinic. The Marfan Clinic, established in 2002, offers an integrated medical, genetic and surgical approach to the diagnosis and treatment of Marfan syndrome and related disorders. Patients have access to a team of specialists who take the time to listen and thoroughly understand their health issues and concerns.
            
             According to Levering, it is particularly significant to have the annual conference in Rochester this year because Mayo Clinic is involved in a major study examining aortic valve operative outcomes in Marfan syndrome. This is the first multicenter, prospective, observational study undertaken to compare outcomes and identify outcome predictors in patients with Marfan syndrome undergoing valve-sparing or valve-replacing aortic root operations.

More Critical Marfan Research in Minnesota

             Children’s Hospitals and Clinics of Minnesota is also playing a key role in the advancement of treatment of Marfan syndrome. Children’s is one of the 27 sites that are participating in a critical clinical trial related to Marfan syndrome treatment.

             In 2006, a study was published showing that losartan prevents and reverses the potentially fatal weakening of arteries in mice with Marfan syndrome. Many medical experts agree that this study was a significant breakthrough because it is the first time a drug has been identified that may prevent and potentially reverse Marfan syndrome’s most life-threatening complications. Enrollment in the clinical trial for people with Marfan syndrome, ages 6 months to 25 years of age, began last year and is still underway. Depending on enrollment and the interim study results, it could take up to six years to complete the study, but increased enrollment will lead to an answer much sooner.

             The trial – which is funded by the National Heart, Lung and Blood Institute and conducted by the Pediatric Heart Network and other centers with leading Marfan clinics – is studying the effects of a commonly prescribed blood pressure medication, losartan, versus atenolol, the beta-blocker treatment that is the current gold standard of treatment for Marfan syndrome. Mary Ella Pierpont, MD, PhD, is the lead investigator at Children’s for this study.

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 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 www.marfan.org.