[Congressional Record Volume 164, Number 40 (Wednesday, March 7, 2018)]
[Extensions of Remarks]
[Pages E275-E276]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           IN RECOGNITION OF NATIONAL MARFAN AWARENESS MONTH

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                       HON. BRIAN K. FITZPATRICK

                            of pennsylvania

                    in the house of representatives

                        Wednesday, March 7, 2018

  Mr. FITZPATRICK. Mr. Speaker, I rise today to recognize February as 
National Marfan Awareness Month with the hope that increased awareness 
of Marfan syndrome and related heritable connective tissue disorders 
will save lives.
  Marfan syndrome is a rare genetic condition. About 1 in 5,000 
Americans carries a mutation in a gene called fibrillin-l 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 almost anywhere. 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 body's internal systems. Most notably, the aorta, which is 
the large artery that carries blood away from the heart, is weakened 
and prone to enlargement and potentially fatal rupture.
  An early and accurate diagnosis, regular monitoring, and 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 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 
care over the next 30 years. I urge my colleagues to stand with me and 
recognize National Marfan Awareness Month.

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