[Congressional Record (Bound Edition), Volume 163 (2017), Part 3]
[Extensions of Remarks]
[Page 3193]
[From the U.S. Government Publishing Office, www.gpo.gov]




                    OBSERVING MARFAN AWARENESS MONTH

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                         HON. THOMAS R. SUOZZI

                              of new york

                    in the house of representatives

                       Tuesday, February 28, 2017

  Mr. SUOZZI. 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.
  Marfan syndrome is a rare genetic condition. About 1 in 5,000 
Americans carries a mutation in a gene called fibrillin-1 which results 
in an overproduction of a protein called transforming growth factor 
beta or TGFB. The increased TGFB impacts connective tissue and since 
connective tissue is found throughout the body, Marfan syndrome 
features can manifest throughout the body. Patients often have 
disproportionately long limbs, a protruding or indented chest bone, 
curved spine, and loose joints. However, it is not the outward signs 
that concern Marfan syndrome patients, but the effects the condition 
has on the internal systems of the body. Most notably, in Marfan 
patients the large artery, known as the aorta, which carries blood away 
from the heart, is weakened and prone to enlargement and potentially 
fatal rupture.
  An early and accurate diagnosis, regular monitoring, and, in some 
cases, therapies or medical interventions are necessary to prevent 
cardiac events. This is why I believe it is important to develop a 
program to support, assist, and encourage states to incorporate Marfan 
syndrome testing into their sports screening criteria for at-risk young 
athletes. Few states include Marfan syndrome testing in their sports 
screening for high school athletes which leads to Marfan syndrome-
related thoracic aortic aneurysm and dissection claiming the lives of 
young athletes across the country each year.
  I am proud to have come to know the nation's foremost organization 
working to support the Marfan community, the Marfan Foundation, through 
their strong advocacy work on Capitol Hill. The Foundation was founded 
in 1981 and 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.
  I urge my colleagues to stand with me and reflect on the work that 
needs to be done to ensure that patients with rare conditions can 
expect to see sustained and meaningful improvements in their health and 
healthcare over the next 30 years. I urge my colleagues to stand with 
me and recognize National Marfan Awareness Month.

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