[Congressional Record Volume 158, Number 32 (Wednesday, February 29, 2012)]
[Extensions of Remarks]
[Page E277]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        RECOGNIZING FEBRUARY AS NATIONAL MARFAN AWARENESS MONTH

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                         HON. GARY L. ACKERMAN

                              of new york

                    in the house of representatives

                      Wednesday, February 29, 2012

  Mr. ACKERMAN. Mr. Speaker, I rise today in recognition of February as 
National Marfan Awareness Month and to acknowledge the hundreds of 
thousands of Americans who are living with Marfan syndrome and related 
connective-tissue disorders.
  I am quite proud that the nation's leading organization working to 
raise awareness of Marfan syndrome and support the Marfan community, 
the National Marfan Foundation, is located in my congressional 
district, in Port Washington, New York. The NMF was founded in 1981 by 
Priscilla Ciccariello, a woman of tremendous compassion and vision. 
Since then, NMF members and staff have worked tirelessly to improve the 
lives of individuals affected by Marfan syndrome and related 
connective-tissue disorders by advancing research, raising awareness, 
and providing support.
  Marfan syndrome is a rare genetic condition that affects connective 
tissue in the human body. About one in 5,000 Americans carries a 
mutation in the fibrillin gene. This irregularity results in an 
overproduction of a protein called transforming growth factor beta or 
TGFB. Increased TGFB impacts connective tissue throughout the entire 
body. Patient symptoms often include disproportionately long limbs, a 
protruding or indented chest bone, curved spine, and loose joints. Of 
most concern is thoracic aortic disease, which is when a Marfan 
patient's aorta, the large artery that carries blood away from the 
heart, is weakened and can result in a fatal rupture. It is for this 
reason that increased awareness of Marfan syndrome can save lives.
  While there is no cure for Marfan syndrome, research is underway to 
enhance our understanding of the condition and improve patient care. I 
commend the scientists at the National Institutes of Health, 
particularly the National Heart, Lung and Blood Institute and the 
National Institute of Arthritis and Musculoskeletal and Skin Diseases 
for their research efforts in this regard. I encourage NIH to continue 
to expand its research of Marfan syndrome.
  Early diagnosis and proper treatment are the keys to successfully 
managing Marfan syndrome so that patients can live a full life. I am 
pleased to announce that recently the American Heart Association and 
the American College of Cardiology released new treatment guidelines 
for thoracic aortic disease. We can facilitate proper treatment by 
raising awareness of these guidelines and we can help achieve an early 
diagnosis by raising awareness of Marfan syndrome and related 
connective tissue disorders.
  Mr. Speaker, I hope my colleagues will join me in raising awareness 
by observing Marfan Awareness Month.

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