Connective Issues Spring 2018

WALK FOR VICTORY

WALK THIS WAY Brad Baker Finds Community in Walk for Victory

WALK FOR VICTORY UPDATE

We met Brad Baker at the Atlanta Walk for Victory in March. It was the first time he had met people outside of his own family who have Marfan syndrome. He wanted to share his story because he thought it would help others.

As this issue of Connective Issues goes to press, our Walk for Victory is celebrating unprecedented success. By the end of June, we will have raised more than $525,000 in 13 cities, with more than 2,500 participants. This is the first time we have surpassed half a million dollars to support community programs. In addition, there have been countless friendships formed and the amount of public awareness and community support generated has been incredible. Pasadena, Portland (OR), New York City, and Boston. We can’t wait to #knowfightwin with you! In the coming year, we are gearing up for Walks in many of the same cities as this year, beginning with St. Louis on October 7, and in new cities, such as Indianapolis on October 14. Watch our website and follow Walk for Victory on Facebook to learn about our upcoming Walk for Victory schedule. If you have any questions, please contact Kim Huddleston, national walk director, khuddleston@marfan.org. Our Spring 2018 Walk for Victory calendar includes

How were you diagnosed with Marfan? I was blessed to have a mom who was knowledgeable about Marfan syndrome. She started bringing me to the cardiolo- gist when I was about 10 years old. I didn’t have genetic testing until I was 30 at Johns Hopkins in Baltimore. What was it like growing up with the condition? Growing up in the 90s, I loved basketball. I’ll never forget my parents telling me I couldn’t play basketball anymore, and

BRAD BAKER, AND HIS WIFE, ALLY

some of the confused reactions of my friends. Experiences like this are trying, but it led me to my one true love—golf! I took it up at age 12 and haven’t looked back since. I learned to live with my limitations, and it really wasn’t all that bad. What kind of support have you had over the years? Honestly, not a lot. I had never met another person with Marfan syndrome (besides my mom) until this year’s Atlanta Walk for Victory. Libby Sparks at Johns Hopkins was one of the most important people if my life. She supported me by giving me great perspective. She always told me to go out and live my life—go travel and play We recently met Ryan Ingraffia after reading about her husband, Matt, on the Walk’s fundraising page. I’ve learned a lot about Matt in the last few weeks — what an incredible guy. Their story inspired us to get involved. I went with my wife, Ally, so she was the only person I knew going in. We were immediately greeted by Kim Huddleston [the Foundation’s national walk director]. She made us feel comfortable right away. We spent time learning about all the great resources the team has pulled I know the Foundation can’t be effective without fundraising. Events like this create awareness and an urgency to give. Seeing others who live successful lives is a great benefit of these events. I saw people with families leading healthy, happy lives, What a remarkable thing! What would you tell others who are feeling alone? You should be proud of who you are. Meeting people who are experiencing the same life challenges as you is a good thing. It took me until I was 34 years old to do it—everyone moves at their own pace. Want to connect with community? Visit the community calendar at Marfan.org to learn about Walks for Victory, Regional Symposiums, and local group events. If there are none near you, there are many ways you can connect with people online through our social media. We also offer a mentor program; contact Susan Leshen, sleshen@marfan.org, for details. some golf. Support from good healthcare providers is invaluable. What was your experience like at the Atlanta Walk for Victory? together and talked to lots of people about their experiences. How has the Walk changed your perspective of Marfan?

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