Connect Issues Spring 2021

p Team Thomas Family at the 2019 Walk for Victory.

WALK FOR VICTORY Samantha Thomas was diagnosed with Marfan syndrome, at the age of 5, shortly after the family moved to Indiana. Until then, her pediatrician had noted her height, long arms, fingers, legs, and feet, but felt she was just tall for her age. As luck would have it, they had moved right into the backyard of a new Marfan clinic in Indianapolis. Jessica, Samantha’s mother, joined the local Indiana Marfan community, and met Dr. Ben Landis at a Family, in support of The Marfan Foundation. Samantha was recognized as a top fundraiser and for her work building awareness for aortic conditions. The Walk for Victory gives the community a way to join together to spread awareness and build support for a bright future. “I loved being with the group just walking and feeling the sense of connection with everyone there. We shared stories and laughed and cried together. It was an amazing day,” said Jessica.

meeting where he was a guest speaker. Shortly after, the Thomas family began seeing Dr. Landis at the Marfan clinic at Riley Children’s Health, where “they are able to treat Samantha entirely, not just for her heart condition,” said Jessica. “It’s a great feeling to be in the hands of so many great doctors at one time.” Dr. Landis and his colleagues feel the same way. They have advanced their Marfan research and expanded the care of people with Marfan and related conditions with an eye on creating a one-stop clinic for individuals who would otherwise need to see multiple specialists in multiple locations. It’s a community of care. And a community, medical or personal, can be transformative for individuals and families living with Marfan syndrome. Indiana has both now, as evidenced by the parallel growth of the Indiana Walk for Victory. In 2019, Samantha’s family created Team Thomas

This year, Riley Children’s has joined the Indiana Walk for Victory alongside teams like Team Thomas Family. “It’s inspiring to see how much we can do with the support of our partners, like Riley Children’s Health and families like the Thomases,” said Kim Huddleston, Marfan Foundation SVP of Development. With strong and growing medical expertise and an engaged group of volunteers, Indiana has a supportive place for kids like Samantha to grow up with Marfan. “I hope that the Marfan clinic continues to grow as does the community involved in the Walk for Victory,” said Jessica. “Both give us resources and support, and most importantly, they provide opportunities to create connections with others who are experiencing the highs and lows of living with a genetic condition like Marfan syndrome.”

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