BENEFITING: The Marfan Foundation
ORGANIZER: The Marfan Foundation
EVENT DATE: Nov 06, 2016
In April 2016, at 22 months old, our youngest daughter, Talulla (Lulu or Lou), was diagnosed with Marfan Syndrome.
Marfan syndrome is a rare life-threatening genetic disorder that affects the body's connective tissue, most seriously the heart, as in Lulu's case. Connective tissue helps to hold the body’s cells, organs, and tissues together and also helps to control how the body grows and develops.
Naturally Lulu's diagnosis hit us hard, but we are so thankful to have detected it so early and to have a better understanding of our path ahead. We have met a great group of doctors and with medication, monitoring and ongoing research we believe Lulu will have a long, happy life.
We truly feel this is our new mission in life and want to do everything possible to help The Marfan Foundation further their research, advocacy, and education to ensure Lulu, and others, are able to live healthy and fulfilled lives.
One of the ways we will be raising awareness for Marfan syndrome is by running in the 2016 New York City Marathon on behalf of The Marfan Foundation's Team Victory.
We are excited to play a small role in this cause and would love if you could help support us and the efforts of The Marfan Foundation by donating in Lulu’s honor in the link below. Of course feel free to share the link as well. Thank you so much and we hope to see some of you along the race!
Sara & Bryan