[Congressional Record Volume 160, Number 33 (Thursday, February 27, 2014)]
[Extensions of Remarks]
[Page E261]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    NATIONAL MARFAN AWARENESS MONTH

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                           HON. STEVE ISRAEL

                              of new york

                    in the house of representatives

                      Thursday, February 27, 2014

  Mr. ISRAEL. Mr. Speaker, I rise today to recognize February as 
National Marfan Awareness Month on behalf of the hundreds of thousands 
of Americans affected by Marfan syndrome and related heritable 
connective tissue disorders across the country.
   It is important to raise awareness of Marfan syndrome and related 
heritable disorders, which are rare genetic conditions. The signs of 
these conditions include long arms and legs, curved spine, a concave or 
convex chest, flexible joints, and flat feet. Some patients may display 
the features of these conditions from birth while others may develop 
them later in life.
   Knowing the signs and features are important and can save lives. The 
heart is often affected too, which can lead to aortic enlargement and 
dissection, and sudden death. An early and accurate diagnosis, regular 
monitoring, and, in some cases, therapies or medical interventions are 
necessary to prevent cardiac events.
   I am proud to represent the Port Washington, NY-based Marfan 
Foundation, which leads the effort to improve the lives of individuals 
affected by heritable connective tissue disorders. This year marks 
Carolyn Levering's 20th anniversary as President and CEO of the 
Foundation. Under her leadership, the Foundation has grown into an 
effective and compassionate organization. As a result of her dedication 
and the hard work of the Foundation, medical research has been 
advanced, treatments and diagnostic tools have been discovered, patient 
care has improved and, most importantly, lives have been saved.
   I understand Carolyn recently announced plans to step down from her 
executive role at the Marfan Foundation next year. When the 
Foundation's Founder, Priscilla Ciccariello, first tapped Carolyn to 
lead the organization into the next century, there is no way she 
could've known just how far the heritable connective tissue disorder 
community could come in just two decades.
   During this Marfan Awareness Month, I call on my colleagues to 
reflect on the progress that Carolyn, Priscilla, and the Marfan 
Foundation have made, and to ask themselves what they can do on behalf 
of their Marfan-affected constituents to ensure that the next twenty 
years are just as encouraging as the previous two decades.

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