[Congressional Record (Bound Edition), Volume 162 (2016), Part 2]
[Extensions of Remarks]
[Page 2332]
[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

                       Friday, February 26, 2016

  Mr. ISRAEL. Mr. Speaker, I rise today in observance of February as 
National Marfan Awareness Month and to pay tribute to the hundreds of 
thousands of Americans who are living with Marfan syndrome and related 
connective tissue disorders.
  I am proud to represent the nation's foremost organization working to 
support the Marfan community, The Marfan Foundation, based in Port 
Washington, New York. The Foundation was founded in 1981 by Priscilla 
Ciccariello, a woman of tremendous compassion and vision. Since then, 
The Marfan Foundation has 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.
  It is estimated that 200,000 people in the United States are affected 
by Marfan syndrome or a related condition. Marfan syndrome is a genetic 
disorder of the connective tissue that can affect many areas of the 
body, including the heart, eyes, skeleton, lungs and blood vessels. It 
is a progressive condition and can cause deterioration in each of these 
body systems. The most serious and life-threatening aspect of the 
syndrome is a weakening of the aorta. The aorta is the largest artery 
carrying oxygenated blood from the heart. Over time, many Marfan 
syndrome patients experience a dramatic weakening of the aorta which 
can cause the vessel to dissect and tear.
  Aortic dissection is a leading killer in the United States, and 20% 
of the people it affects have a genetic predisposition, like Marfan 
syndrome, to developing the complication. If patients receive an early 
and accurate diagnosis, the disease process can be slowed. However, due 
to a lack of education and awareness, physicians often do not diagnose 
a patient until an adverse cardiac event occurs.
  High school athletes represent the most alarming group of individuals 
affected by adverse cardiac events, with an estimated incidence of once 
or twice per week. The inadequate health screening of athletes 
contributes annually to the untimely deaths of many young adults, 
especially those affected by structural cardiovascular abnormalities, 
such as Marfan syndrome. A recent example of the need for consistent 
cardiovascular screening guidelines is Isaiah Austin, who was diagnosed 
with Marfan syndrome when entering the National Basketball Association 
(NBA) Draft and thus previously unaware that he was at risk for sudden 
cardiac death during his entire scholastic basketball career.
  Mr. Speaker, I encourage my colleagues to join me and The Marfan 
Foundation in raising awareness of this life-threatening disorder so we 
can prevent future unnecessary tragedies. I urge my colleagues to stand 
with me and reflect on what we can do to efficiently and effectively 
address this growing public health concern of health screenings for 
high school athletes. I look forward to working with my colleagues on 
both sides of the aisle to increase support for health screening 
programs in public and private high schools throughout the nation that 
aim to identify this silent enemy of our young athletes.

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