Connective Issues Winter 2018

CREATING CONNECTIONS

MANDY SHAW: MOTIVATED TO IMPACT CHANGE Houston Walk for Victory Co-Chair is Driven to Raise Awareness and Raise Funds

2018 WALK FOR VICTORY

SCHEDULED WALKS Hollywood, FL: January 21 Houston, TX: March 3 Atlanta, GA: March 10 Phoenix, AZ: March 11 Cleveland, OH: March 25 Washington, DC: April 14 Portland, OR: May 20

Mandy Shaw had never heard of Marfan syndrome before she met her late husband, Mike, in 2006. For the next seven years, she learned more and more as she watched all he endured. What was missing, she admitted, was support. “Sure, we have the greatest family and friends who were all there for us,” Mandy said. “But, no one understood what we were going through because they weren’t living it every day.” That changed when she went to the first Houston Walk for Victory in 2016. At that point, her son had not yet been diagnosed; she attended as a tribute to her husband. Now, in 2018, she is a co-chair of the event. “The Walk for Victory is such a fun family day and we love meeting new people and hearing their stories,” said Mandy. “The way The Marfan Founda- tion is connecting people and working to educate and advocate is incredible to me. I’m happy to have even a small part of involvement with that.” What I found in the first Houston Walk for Victory was an incredible community of people who understood what life with Marfan syndrome was like. Then, in June 2016, when my now four-year-old son, Michael, was diagnosed with Marfan, I didn’t feel as isolated as I did when my husband was alive. I knew there was support out there and this wasn’t a battle we had to fight alone. Since then, I have met some incredible families, all facing the same battles we are. It is so refreshing to be able to talk about what our family members are going through and know that we all get it. The Walk Why is the Walk for Victory so important to you and your family?

DATES PENDING Boston, MA New York City

Want to be a successful fundraiser? Mandy Shaw advises: Share your story and be person- able. People want to know why you’re passionate about the Walk for Victory. Share facts. It’s important to educate others and who better to educate than someone who is directly impacted by Marfan syndrome? She says, “My family and friends appreciate it when I share infor- mation and relate it to how it directly impacted us” For more information on Walk for Victory, please visit Marfan.org or contact Kim Huddleston, national walk manager, at khuddleston@marfan.org.

MANDY SHAW WITH HER CHILDREN, MICHAEL AND MADISON

for Victory connected me with the Foundation and a large support network.

How does your son Michael feel about the Walk for Victory? He loves the walk and had so much fun last year! He still talks about the park, face painting, and seeing Anna from Frozen! He doesn’t fully grasp the concept of what we are walking for, at four years old, but he has no problem being the center of attention. I am driven to be a top fundraiser because of my late husband and my son. Mike would have loved the Walk for Victory and I wish so much that he was here to be able to experience the support we have found. It is also so important to me to help increase aware- ness—so that people know about Marfan syndrome and so that those who are diagnosed know that they are not alone. What motivated you to become a top fundraiser last year?

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