BENEFITING: The Marfan Foundation
I see the daily struggle with a person with Marfan syndrome. My son awakes at around 11 am and waits for his body to tell him how many "Spoons" he has available to "spend" that day. Every day he lives with the dread that today may be his last. So many don't know what Marfan syndrome is. It is connective tissue disorder in which a lack of the protein called fibrilin leaves his joints loose and painful. Joints pop in and out easily. It is also a potentially life-threatening genetic disorder, yet people can live a longer lifespan if they are diagnosed and treated. Otherwise, alarmingly, they are at risk of a sudden early death due to a tear in their aorta, the large artery that takes blood away from the heart. Medical experts say that half of those with Marfan syndrome are not diagnosed and are at risk. The Marfan Foundation works to create a brighter future for everyone living with Marfan syndrome and related disorders. This includes funding research, providing patient support, and conducting public and medical education to ensure that everyone affected is diagnosed and treated. The Walk for Victory helps fund our life-saving programs and service. I am running on behalf of my son and all those who live with this relatively unknown yet debilitating condition, raise awareness, and help Doctors understand and treat those with Marfan Syndrome.