National Marfan Awareness Monthby Representative Steve Israel
Posted on 2013-02-28
of new york
in the house of representatives
Thursday, February 28, 2013
Mr. ISRAEL. Mr. Speaker, I rise today on behalf of the hundreds of
thousands of Americans affected by Marfan syndrome and related
heritable connective tissue disorders across the country.
As February marks National Marfan Awareness Month, it is important to raise awareness to this rare genetic condition. About 1 in 10,000 Americans carries a genetic mutation that impacts connective tissue throughout the entire body. Patients often have disproportionately long limbs, a protruding or indented chest bone, curved spine, and loose joints. However, these are not what most concern Marfan syndrome patients. Internal organs have connective tissue and in Marfan patients the aorta, the large artery that carries blood away from the heart, is weakened and prone to enlargement and potentially fatal rupture.
This year marks the 30th anniversary of the enactment of the Orphan Drug Act. While we have made great strides in addressing rare conditions since the Orphan Drug Act first became law, we must not lose sight of the work that still needs to be done. Patients with Marfan syndrome and related disorders rely on us to provide investment in critical research activities so that treatment options can be improved and, most importantly, so that cures can be found.
I am proud to represent the nation's foremost organization working to support the Marfan community, the National Marfan Foundation, based in Port Washington, New York. The Foundation was founded in 1981 by Priscilla Ciccariello, and since then the Foundation has worked to improve the lives of those affected by Marfan syndrome and related disorders by promoting research, raising awareness, and providing support to those afflicted with Marfan.
I urge my colleagues to join me in recognizing National Marfan Awareness Month. I look forward to working with colleagues from both sides of the aisle to make critical investments in medical research and treatment to save the lives of people across the United States.