Connective Issues Winter 2015

AWARENESS

ST. LOUIS WALK: A VICTORY FOR THE COMMUNITY

FEBRUARY IS MARFAN AWARENESS MONTH February is our month, the time for all of us in the Marfan syndrome and related disorders community to amplify our efforts to raise awareness of Marfan syndrome and related disorders. Here’s why: • There are still people who have Marfan syndrome and are not diagnosed. Without treatment, they are at risk of a sudden early death from a tear of their aorta. With a diagnosis and treatment, their medical issues can be managed and they can take steps to avoid a tragedy. You can save a life. • There are people with a diagnosis who still feel alone. They don’t know that we have a warm and welcoming community ready to provide support, share informa- tion, and help them on their journey. You can be the one who connects them to The Marfan Foundation. • There are people in your com- munity who don’t know about Marfan syndrome or related disorders. By helping them to understanding these conditions, you can make your community a better place for you and your family to live with your diagnosis. • There are doctors who are not familiar with the latest on Marfan syndrome and related disorders; perhaps they are your doctors or other doctors in your community. your care and the care of others. What can you do? Go to Marfan.org and click on Get Involved then Volunteer. You can also email volunteer@marfan.org. By providing them with new information, you can improve

“MY FRIENDS AND CO-WORKERS KNEW I HAD A HEALTH PROBLEM, BUT DIDN’T KNOW MUCH ABOUT IT. THROUGH THE WALK FOR VICTORY, THEY LEARNED MORE ABOUT MARFAN SYNDROME, AND ARE EVEN MORE SUPPORTIVE OF ME,” SAID LAURA TORODE, BOTTOM ROW, LEFT, WITH TEAM TORODE.

The Marfan Foundation’s St. Louis chapter has a long history and has been energized over the years by supporting the annual family conference twice (when it was hosted by Washington University School of Medicine) and the Heartworks St. Louis gala, an annual event. Still, according to Laura Torode, the chapter president, it is challenging to bring the local Marfan syndrome and related disorders community together for informal gatherings where they can share experiences and bring new people in. Enter The Marfan Foundation’s Walk for Victory, which was held in St. Louis in October, and attracted more than 100 people from near and far. Dawn Pulliam, a long-time member of the chapter, said, “What makes the walk so special is that it is a way to bring our family and friends, who make up our own support networks, into the fold. I was honestly shocked by the number of people who came and was thrilled to meet new people from our area.” The Walk for Victory works, says Laura, because it is fun for a variety of age groups. And if you’ve never been to a local event before, it’s completely

comfortable. “It’s so powerful to be part of the Walk for Victory with others in our community and your own friends and family,” said Laura. “You can really feel the energy when we’re all together.” The Walk for Victory is coming to these states in 2015: • Arizona (Scottsdale) • Georgia (Roswell)

• New York (Woodbury) • Massachusetts (Salem) • New Jersey (Paramus) • Missouri (St. Louis). Check our website for details.

DAWN PULLIAM, PICTURED HERE WITH HER HUSBAND, ROB, AND DAUGHTERS RILEY AND BROOKE, WHO HAS MARFAN SYNDROME LIKE HER MOM.

12 Marfan.org