We are at a crucial juncture in research as new pathways and new targets have been identified...The gift from Bloomberg Philanthropies ensures that we will be able to... advance research globally.
Port Washington, NY (PRWEB) May 07, 2012
The National Marfan Foundation (NMF) announced today that it has received a $5 million commitment from Bloomberg Philanthropies as a leadership gift for its research campaign, Discovering Drug Therapies for Longer and Healthier Lives. This campaign represents the most ambitious and complex research agenda pursued to date by the NMF.
“The NMF is grateful to Mayor Michael Bloomberg and Bloomberg Philanthropies for its commitment to research that will enhance the lives of people with Marfan syndrome and related disorders,” said Carolyn Levering, NMF President and CEO. “We are at a crucial juncture in research as new pathways and new targets have been identified that have the potential to lead to new life-saving treatments for affected people. The gift from Bloomberg Philanthropies ensures that we will be able to build upon past successes, leverage previous investments, anticipate new frontiers of science, and secure core resources and forums to advance research globally.”
The leadership gift provides the NMF with resources to:
- Fund meritorious research for its expanded grant program to incentivize physicians and scientists at all stages of their career to pursue research on Marfan syndrome and related disorders.
- Sustain support for critical research resources, including the largest Marfan animal colony in the world, which was developed at Johns Hopkins University and is relied upon by scientists globally who are conducting related research. These resources are essential to the advancement of translational research activities over the next five years.
- Convene leading researchers – accomplished scientists and new investigators -- at international symposia and scientific workshops.
- Plan a clinical trial network to build capacity for future clinical trial opportunities and cultivate an informed patient community.
- Continue dynamic partnerships with the National Institutes of Health and other collaborators to realize the full potential of current and future research on Marfan syndrome and related disorders.
Michael Bloomberg is a long-time supporter of the National Marfan Foundation, and has served as the Honorary Chair of the NMF’s Heartworks Gala for the past 12 years. The 2012 Heartworks, held in April, raised nearly $900,000 for the NMF’s programs in education, support and research. As in past years, he was on hand to welcome the 400 attendees.
The National Marfan Foundation and Marfan Syndrome
The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life of individuals and families affected by the Marfan syndrome and related disorders by:
- Educating affected individuals, family members and the health care community about Marfan syndrome and related disorders.
- Advocating for and funding clinical and molecular research into the early detection and treatment of these conditions.
- Providing a network of local and special-interest support groups to help affected people and their families share experiences.
Marfan syndrome is a connective tissue disorder that affects the heart, blood vessels, eyes, bones, joints and lungs. It is often, but not always, characterized by a tall stature and disproportionately long legs and arms. Other skeletal manifestations are curvature of the spine, a protruding or indented chest and loose joints. The most serious problem associated with the Marfan syndrome is its effect on the aorta, the main artery carrying blood away from the heart. In affected people, the aorta is prone to progressive enlargement, which can lead to tears in the aortic wall that require surgery. If aortic enlargement and tears are left undetected, the aorta may rupture, leading to sudden death.
The life expectancy for people with Marfan syndrome who are diagnosed and treated is now in the 70s due to advances in cardiovascular surgery, increased options in medical therapy and better diagnosis.
Currently, there is a critical clinical trial under way on a medication, losartan, which has been shown to prevent and even reverse aortic enlargement in mice with Marfan syndrome. The study, which is being funded by the National Heart, Lung, and Blood Institute, is examining losartan vs. atenolol, a beta blocker, in people with Marfan syndrome age six months to 25 years. It is being conducted at study sites throughout the U.S., in Canada and overseas.
Approximately 200,000 people in the U.S. have Marfan syndrome or a related connective tissue disorder. In most cases, the condition is inherited; one-quarter of people with Marfan syndrome are the first in their family to be affected.
For more information on Marfan syndrome and related disorders, call 800-8-MARFAN, ext. 26, or visit http://www.marfan.org.
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