Stanford University School of Medicine to Host 23rd Annual National Marfan Foundation Conference, July 12-15, 2007

PORT WASHINGTON, NY, JUNE 19 — Stanford University School of Medicine is hosting the 23rd Annual National Marfan Foundation (NMF) Conference, on the Stanford University campus, July 12-15, 2007. 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. Approximately 600 individuals, primarily affected people and their families, are expected to attend the conference to learn about Marfan syndrome and network with other people with the disorder.

“It is wonderful to bring the NMF Annual Conference to Stanford University, which has one of the foremost Marfan syndrome clinics in the country,” said NMF President and CEO Carolyn Levering. “We are extremely grateful to the hard-working volunteers of the NMF’s Northern California Chapter who have played a major role in pulling the details of this conference together and are planning a welcome barbecue that is sure to be fun for all attendees.”

According to Levering, it is also significant to be in Palo Alto this year because Stanford University is one of the 18 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.

Last year, 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 earlier this year. 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 12-13, where people who have a diagnosis or suspect that they have Marfan syndrome can be evaluated by Marfan experts from all over the country (by appointment only).

General conference sessions are on July 14, with medical presentations and a panel discussion led by Marfan syndrome researchers and physicians. They will address various aspects of Marfan syndrome, including current research, surgical advancements and drug treatments, and answer questions from conference attendees. On that day, the conference also features small-group workshops where attendees can discuss specific medical concerns of the Marfan syndrome with physicians and other medical professionals. On July 15, workshops about the social concerns of the disorder will be held.

More than 60 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 registration, travel and accommodations. 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 Stanford Hospital and Clinics, St. Jude Medical Foundation, Edwards Lifescience, Medtronic and Boston Scientific, which helped make this conference possible.