[Congressional Record (Bound Edition), Volume 161 (2015), Part 2]
[Extensions of Remarks]
[Page 2475]
[From the U.S. Government Publishing Office, www.gpo.gov]




        RECOGNIZING FEBRUARY AS NATIONAL MARFAN AWARENESS MONTH

                                 ______
                                 

                           HON. STEVE ISRAEL

                              of new york

                    in the house of representatives

                       Tuesday, February 24, 2015

  Mr. ISRAEL. Mr. Speaker, I rise today to recognize February as 
National Marfan Awareness Month with the hope that increased awareness 
of Marfan syndrome and related heritable connective tissue disorders 
will save lives.
  Raising awareness of Marfan syndrome, a rare genetic condition 
affecting 1 in 5,000 Americans, is imperative to finding and funding 
effective treatment. This debilitating condition affects individuals 
both externally and internally.
  Connective tissue, as a result of the overproduction of a protein 
called transforming growth factor beta (TGFB), is affected and 
therefore symptoms manifest throughout the entire body, causing 
disproportionately long limbs, a protruding or indented chest bone, 
curved spine, and loose joints.
  Understanding the signs and features of Marfan syndrome are important 
and can save lives. This condition can affect all aspects of a person's 
internal structures, most notably their cardiovascular system. Often 
times, the aorta, the larger artery that carries blood away from the 
heart, is weakened and prone to enlargement and potential rupture. 
Because of the excess TGFB, Marfan patients are also at risk of aortic 
aneurysm.
  However, early diagnosis and treatment can help to prevent cardiac 
events. For this reason, I believe States should consider developing 
programs to include Marfan syndrome testing in their sports screening 
criteria for at-risk young athletes.
  I am proud to represent the Marfan Foundation, the leading 
organization working to support the Marfan community, based in Port 
Washington, New York. Since the group's inception, the Foundation has 
worked tirelessly to improve the lives of those affected by this 
condition through advancing research, raising awareness, and providing 
support over the past two decades. Through their efforts, patient care 
has improved and lives have been saved.
  I urge my colleagues to stand with me to recognize National Marfan 
Awareness Month and reflect on the progress that has been made as well 
as the work that remains in order to ensure that those suffering from 
rare conditions can expect to see improvements in their health and 
healthcare.

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