Children’s Hospital Boston and Brigham and Women’s Hospital to Host 24th Annual National Marfan Foundation Conference, July 10-13, 2008
Children’s Hospital Boston and Brigham and Women’s Hospital are hosting the 24th Annual National Marfan Foundation (NMF) Conference on July 10-13, 2008. 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.
Ronald V. Lacro, MD, Michael F. Murray, MD, and Michael N. Singh, MD are spearheading the conference initiative at their respective hospitals. Dr. Lacro director of the Cardiovascular Genetics Clinic and Marfan Syndrome Program at Children's Hospital Boston; and Drs Murray and Singh are Michael F. Murray, MD, are the co-directors of the Marfan Syndrome/Connective Tissue Disorder Clinic at Brigham and Women's Hospital.
The partnership between the hospitals for this family conference is significant because it showcases their collaboration in treating people with Marfan syndrome. This ensures that patients receive the highest standard of continuous, coordinated care as they transition from pediatric to adult Marfan needs.
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 Brigham and Women’s Hospital and Children’s Hospital Boston. The conference presentations and workshops will take place at the Westin Copley Place.
“It is wonderful to bring the NMF Annual Conference to Boston, which has a long history of excellence in medical research and patient care. Our host institutions are among the finest in the country in treating people with Marfan syndrome and related disorders and are at the forefront of Marfan syndrome research,” said NMF President and CEO Carolyn Levering. “We are extremely grateful to the hard-working volunteers of the NMF’s Massachusetts Chapter who have taken a lead role in organizing the conference, including a welcome event for us at Northeastern University and special programs for children and teens.”
Children’s Hospital Boston and Brigham and Women’s Hospital are Leaders in Marfan Syndrome Research
According to Levering, it is particularly significant to have the annual conference in Boston this year because Children’s Hospital Boston and Brigham and Women’s Hospital are both leading major research studies on Marfan syndrome.
Children’s Hospital Boston is one of the 27 sites that are participating in a critical clinical trial related to Marfan syndrome treatment. 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. Dr. Lacro is co-principal investigator. The NMF is providing patient support.
Brigham and Women’s Hospital is leading a study on the use of losartan in adults with Marfan syndrome. Children’s Hospital Boston is also participating in this research. The American College of Cardiology is funding this study, with support from the NMF.
In 2006, a study was published showing that losartan prevents and reverses the potentially fatal weakening of arteries in ice 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.
NMF Conference has Family Focus
The NMF Annual Conference begins with Marfan syndrome evaluation days on July 10-11, 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). Children’s Hospital Boston will be providing echocardiograms and ophthalmologic exams while the cardiac, orthopedic and genetic exams will take place at Brigham and Women’s Shapiro Cardiovascular Center.
General conference sessions are on July 12, 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, surgical advancements and drug treatments, and answer questions from conference attendees. Related disorders, such as the recently identified Loeys-Dietz syndrome, will also be a focus.
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 July 13, workshops about psycho-social concerns will be held.
More than 70 individuals and families are attending the conference with the assistance of an NMF Conference Scholarship. More than $30,000 was awarded to these people 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 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. A record number of scholarship applications were received this year.
The National Marfan Foundation is grateful for the generous support from Children’s Hospital Boston, Brigham and Women’s Hospital and the NMF’s Massachusetts Chapter, as well as Partners HealthCare, Newman’s Own Foundation, Schneider-Electric, Affinity VideoNet, Dupuy Spine, American Heart Association, Ocean Spray, Lindt Chocolates, Green Mountain Coffee and Sagan Agency Realtors, which helped make this conference possible.
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 click here.
Children's Hospital Boston
Children's Hospital Boston is one of the nation's premier pediatric medical centers. Founded in 1869 as a 20-bed hospital for children, today it is a 397-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's is the primary pediatric teaching affiliate of Harvard Medical School, the largest provider of health care to the children of Massachusetts, and home to the world's leading pediatric research enterprise. For more information about Children's, visit: www.childrenshospital.org
Brigham and Women’s Hospital
Brigham and Women's Hospital (BWH) is a 747-bed nonprofit teaching affiliate of Harvard Medical School and a founding member of Partners HealthCare, an integrated health care delivery network. BWH is committed to excellence in patient care with expertise in virtually every specialty of medicine and surgery. The BWH medical preeminence dates back to 1832, and today that rich history in clinical care is coupled with its national leadership in quality improvement and patient safety initiatives and its dedication to educating and training the next generation of health care professionals. Through investigation and discovery conducted at its Biomedical Research Institute (BRI), BWH is an international leader in basic, clinical and translational research on human diseases, involving more than 860 physician-investigators and renowned biomedical scientists and faculty supported by more than $416 M in funding. BWH is also home to major landmark epidemiologic population studies, including the Nurses' and Physicians' Health Studies and the Women's Health Initiative. For more information about BWH, please visit www.brighamandwomens.org
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