Charity of the Month: The Marfan Foundation
Houston Roller Derby is thrilled to be featuring The Marfan Foundation as our charity of the month! We will be highlighting some of the amazing members of its community during Marfan Awareness Night at our 2019 season opener game on Saturday, March 2nd. Join us for an evening of action and advocacy as HRD and The Marfan Foundation join forces to spread awareness about Marfan syndrome and related conditions!
The Marfan Foundation was nominated as the charity of the month by Valkyries co-captain, The Prim Reaper. Known to her patients as Taylor, Prim is a certified genetic counselor with the Cardiovascular Genetics team at Texas Children’s Hospital. This team specializes in treating kids with genetic disorders that lead to heart disease, and many of their patients have Marfan syndrome or a related condition.
Marfan syndrome is a genetic condition that affects the connective tissue, which supports the bones, tendons, ligaments, heart valves, and blood vessels by holding the body’s cells together. It affects multiple parts of the body, including the skeletal system, the eyes, and the lungs, but the most life-threatening complications occur in the main artery of the heart known as the aorta. An estimated 200,000 people in the U.S. have Marfan syndrome or a related connective tissue condition, but about half don’t know it. Fortunately, people with Marfan syndrome are expected to have normal lifespan IF they are diagnosed and treated.
When asked why she nominated The Marfan Foundation, Prim shared, “with February being Marfan Awareness Month, it seemed like the perfect time to expose the roller derby community to this incredible advocacy organization. After working closely with the Foundation, I quickly realized the massive impact they have on the Marfan community by providing crucial educational resources to families, actively supporting life-saving research, and creating a tight-knit community of support.”
HRD’s Marfan Awareness Night will also highlight inspirational families impacted by Marfan syndrome and similar connective tissue disorders. According to Prim, “by featuring The Marfan Foundation and the community of families they advocate for, we’re also able to promote an important cause. Spreading awareness about the physical signs of Marfan syndrome has the power to save lives!”
The Marfan Foundation also hosts the Walk for Victory, an annual fundraiser held in cities across the country to bring the Marfan syndrome and related disorders community together. The Houston Area event takes place the same day as our season opener on Saturday, March 2nd. It’s scheduled to start at 12:00 pm and will be held at Discovery Green in downtown Houston! For information on how to participate in Houston’s Walk for Victory or to make a donation to The Marfan Foundation, please visit this website.