When my daughter London was two years old, I noticed she was having trouble seeing our large screen TV.  A visit to an eye specialist confirmed that her vision was impaired, and further investigation led to the eventual diagnosis of Marfan syndrome.  I had never heard of Marfan syndrome, and I threw myself into learning as much as I could about this disorder of the connective tissue.  The most valuable resource I found, and continue to count on, is The Marfan Foundation.

The Marfan Foundation is the only non-profit organization in the world that provides resources, educational programs, and research on Marfan syndrome and related disorders.  Its goal is to create a brighter future for everyone affected, and ensure they receive a proper diagnosis, get the necessary treatment, and live a long and full life.  Since 1986, The Marfan Foundation has funded more than 200 researchers and spent more than $17 million on research grants throughout the world.  Because of the work of The Foundation, the life expectancy of a person with Marfan syndrome has increased from the 40’s in 1970 to today, when life expectancy is similar to that of the general population.

London is a happy and engaging pre-teen, and thanks to the specialists here in Chicago and across the country, she will continue to thrive. 

Thanks to your support, London and others like her will continue to benefit from the research and programs provided by The Marfan Foundation.

For more information about Marfan syndrome, please visit www.marfan.org