November 08, 2016
BENEFITING: The Marfan Foundation
ORGANIZER: The Marfan Foundation
EVENT DATE: Nov 06, 2016
The Marfan Syndrome is a genetic condition that affects connective tissue. Because connective tissue is found throughout the body, the Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs. As many as 1 in 5000 people in the United States is estimated to have this condition, yet few people have heard of it.
In 2005, we discovered that our daughter Anna (now 14) has the Marfan syndrome. She has great doctors and is a tough, happy teenager who takes the frequent holter monitor tests, echocardiograms, and eye doctor appointments in stride. We recently completed a 2 year enrollment in a clinical trial sponsored by the National Institute of Health examining the impact of a specific kind of medication on the Marfan Syndrome (Aorta enlargement primarily). There are many questions about Marfan Syndrome that have yet to be answered, and exciting new treatments not yet explored. We want to help, and we would like to ask for your help as well.
The 2016 NYC Marathon represents our 3rd fundraising effort to support the National Marfan Foundation. In 2009, Jon ran 4 marathons as a part of a fund raiser to support the NMF. Beth joined him at the 4th marathon in San Antonio and completed the half marathon as a part of this effort. In 2013, Beth and Jon partnered with their friends Matt and Molly Wowk in running the Marine Corps marathon in support of the NMF. Many of you reading this message have already donated in support of this cause. For that, we thank you from the bottom of our hearts. Together, we have raised more than $15,000 to support the NMF in their mission and efforts to raise money for Marfan Syndrome research, awareness, and education.
Please consider donating to support this cause that is so important to us!
Jon and Beth Gould
The Marfan Foundation wrote -
The Marfan Foundation is proud of be a charity partner of the 2016 TCS New York City Marathon. We will have 9 people running for victory and raising funds and awareness of Marfan syndrome and related disorders.
Marfan syndrome is a life-threatening genetic disorder that most seriously affects the heart, blood vessels, and eyes, so we do everything possible, including research, advocacy, and education, to make sure people can live longer, fuller lives.
Please support our marathon runners. Their efforts allow the Foundation to do our life-saving work. Go Team Victory!