[Congressional Record (Bound Edition), Volume 153 (2007), Part 3]
[Extensions of Remarks]
[Pages 3927-3928]
[From the U.S. Government Publishing Office, www.gpo.gov]




   STATEMENT RECOGNIZING FEBRUARY AS NATIONAL MARFAN AWARENESS MONTH

                                 ______
                                 

                         HON. GARY L. ACKERMAN

                              of new york

                    in the house of representatives

                       Tuesday, February 13, 2007

  Mr. ACKERMAN. Madam Speaker, I rise today in observance of February 
as National Marfan Awareness Month and to recognize the hundreds of 
thousands of Americans who are living with Marfan syndrome and related 
connective tissue disorders.
  I am proud that the Nation's premier organization supporting the 
Marfan syndrome community, the National Marfan Foundation, is 
headquartered in my congressional district in Port Washington, NY. The 
NMF was founded 25 years ago by Priscilla Ciccariello, a woman of 
enormous compassion and vision. For the past quarter-century, the NMF 
has been dedicated to saving lives and improving the quality-of-life 
for Marfan patients through research, support services, education, and 
advocacy.
  This year marks the 16th observance of National Marfan Awareness 
Month which is designed to educate the general public and healthcare 
providers about this challenging condition. Marfan syndrome is a 
genetic disorder of the connective tissue that can affect many body 
systems, including; the skeleton, eyes, heart, nervous system, lungs 
and blood vessels. Of primary concern to patients is the impact the 
syndrome can have on the aorta. In Marfan patients, the aorta (the 
large artery that carries blood away from the heart) is weakened and 
prone to enlargement and rupture, which is often fatal. Currently, 
there is no cure for Marfan syndrome but with early diagnosis, proper 
treatment and careful management, patients can live a normal lifespan.
  Madam Speaker, I am pleased to inform the House that we are at an 
unprecedented time of hope in the field of Marfan syndrome research. 
Just last month, the National, Heart, Lung and Blood Institute at the 
National Institute of Health, working closely with NMF, initiated a 
groundbreaking clinical trial on Marfan syndrome. This trial seeks to 
determine the efficacy of a medication currently used to control high-
blood pressure for treating aortic growth in children with Marfan 
syndrome. The blood-pressure medication has shown a remarkable ability 
to halt and even reverse aortic growth in pioneering basic research 
conducted by Dr. Hal Dietz of the Johns Hopkins University School of 
Medicine. I applaud NHLBI Director Dr. Elizabeth Nabel, and Dr. Gail 
Pearson, Chief of the NHLBI's Heart Development and Structural Diseases 
Branch, for their leadership in supporting this promising trial.

[[Page 3928]]

  Madam Speaker, February was chosen as National Marfan Awareness Month 
in part to coincide with Abraham Lincoln's birthday. President Lincoln 
is believed to have been affected by Marfan syndrome based on the many 
outward signs of the disorder he portrayed. Marfan syndrome patients 
are frequently taller than non-affected members of their family and 
have disproportionately long limbs, fingers and toes. In addition, they 
often have an indented or protruding chest-bone, curved spine, high-
arched palate, and loose joints. Other well known individuals who were 
afflicted with the Marfan syndrome include Jonathan Larson, the Tony 
Award winning playwright of the Broadway musical Rent, Flo Hyman, 
captain of the U.S. Olympic volleyball team that won a gold medal in 
1984, Charles de Gaulle, the composer Sergei Vasilievich Rachmaninoff, 
and Mary, Queen of Scots.
  According to the Centers for Disease Control and Prevention, 
approximately 14,000 people die each year of aortic aneurysms and 
dissections, 20 percent of which can be contributed to genetic 
disorders such as Marfan syndrome. Unfortunately, a lack of awareness 
about Marfan syndrome continues to result in patients dying before 
being properly diagnosed and treated. Madam Speaker, I encourage my 
colleagues to join me and the National Marfan Foundation in raising 
awareness of this life-threatening disorder so we can prevent future 
unnecessary tragedies.

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