February 25, 2019 - Issue: Vol. 165, No. 34 — Daily Edition116th Congress (2019 - 2020) - 1st Session

[Extensions of Remarks]
[Pages E201-E202]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         MARFAN AWARENESS MONTH

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                         HON. THOMAS R. SUOZZI

                              of new york

                    in the house of representatives

                       Monday, February 25, 2019

  Mr. SUOZZI. Madam Speaker, I rise today on behalf of Americans 
affected by Marfan syndrome and related connective tissue disorders in 
observance of February as Marfan Awareness Month.
  Marfan syndrome is a rare genetic condition. About 1 in 5,000 
Americans carries a mutation in gene called fibrillin 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 internal systems. Most notably, in Marfan patients the large 
artery, known as the aorta, which carries blood away from the hemi is 
weakened and prone to enlargement and rupture, which can be fatal. It 
is for this reason that increased awareness of Marfan syndrome can save 
lives.
  I am proud to represent The Marfan Foundation, which is headquartered 
in Port Washington. The Marfan Foundation is the nation's foremost 
organization working to raise awareness of Marfan syndrome and 
supporting the marfan community. The Marfan Foundation has worked 
tirelessly to improve the lives of individuals affected by Marfan 
syndrome and related connective tissue conditions by advancing 
research, raising awareness, and providing support.
  While there is currently no cure for Marfan syndrome, efforts are 
underway to enhance our understanding of the condition and improve 
patient care. I applaud 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 expand research 
efforts in this area.
  Early diagnosis and proper treatment are the keys to managing Marfan 
syndrome and living a full life. I encourage my colleagues to join me 
in supporting a Marfan education and awareness program at the Centers 
for Disease Control and Prevention. We can facilitate proper treatment 
by raising awareness leading to early diagnosis. I urge my colleagues 
to join me in recognizing February as Marfan Awareness Month.

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