[Congressional Record (Bound Edition), Volume 159 (2013), Part 2]
[Extensions of Remarks]
[Page 2156]
[From the U.S. Government Publishing Office, www.gpo.gov]




                    NATIONAL MARFAN AWARENESS MONTH

                                 ______
                                 

                           HON. STEVE ISRAEL

                              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.

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