Connect Issues Winter 2022

CLEVELAND AND ST. LOUIS SET THE TONE

The Foundation kicked o ff the 2021-2022 Walk for Victory season with record-setting events in Cleveland in September and in St. Louis in October. Our presenting sponsor in Cleveland, the Cleveland Clinic, had its sights set on taking the Walk to the next level. With the event now on the campus of the famed institution, the Walk attracted 265 people with Marfan, Loeys-Dietz, and VEDS – and their families and friends – and raised $51,000. “The Marfan Walk for Victory is a great community awareness event for Marfan and other vascular connective tissue conditions,” said Dr. Vidyasagar Kalahasti, adult cardiologist at Cleveland Clinic, which specifically requested that the Walk be scheduled on September 19, Aortic Disease Awareness Day. Dr. Kenneth Zahka, a pediatric cardiologist at Clevelend Clinic, agreed. He added, “The Walk also gives me a chance to get together with my colleagues in genetics, adult cardiology, and cardiac surgery. It reminds us of the continuity of care and the importance of teams to bring the best care to patients of all ages with connective tissue conditions.” Maya Brown-Zimmerman, who started the March for Marfan, the precursor to the Cleveland Walk, in 2006 when she was a member of the Alpha Phi Omega service fraternity at Case Western, talked about the benefits of the Walk to the community, especially as the event has grown. “It's amazing to see how this Walk has expanded over the years,” said Maya, who attended this year with her

p Dr. Alan Braverman (far right) looks on as his team cuts the ribbon.

son, Julian, who has Marfan, her husband, and her three other children. “It provides an important opportunity for our community to come together and celebrate while raising funds and awareness. We are lucky to have a hospital that is so involved in the e ff orts as well!” Our St. Louis community, not to be outdone, broke its own record on October 3, raising $65,200 (and counting) through the Walk for Victory. Team Braverman, led by Dr. Alan Braverman, a member of the Foundation’s Professional Advisory Board and Board of Directors, totaled $31,699 in donations while Team Bobbe raised $22,378, with more to come this year. “We have a very special community in St. Louis and across the bi-state area and all the way to Kansas City!” said Dr. Braverman, who is director of the Marfan Syndrome and Aortopathy Clinic at Washington University School of Medicine and Barnes-Jewish Hospital, and also serves as the Medical Chair for the St. Louis Walk. “It is a privilege for my nurses, Barb Stehman and Dana Gima, and me to care for this special group of people and to help raise funds for the Foundation.” Our St. Louis Community Chair, Nikki Bobbe, mom of six-year-old Elliott, who has Marfan, summed it up best. “If one life is saved by our e ff orts or if the future for people with Marfan and related conditions can be a tiny bit better than before, then that’s our goal.”

p Dr. Vidyasagar Kalahasti cut the ribbon for the Cleveland Clinic team.

CLEVELAND WALK FOR VICTORY

ST. LOUIS WALK FOR VICTORY

Medical Chair: Dr. Eric Roselli, Cleveland Clinic Community Chairs: Benita Gallagher, Shannon Mace, and Lindsey Swancer

Medical Chair: Dr. Alan Braverman, Washington University School of Medicine Community Chairs: Bobbe Family and Kristin Stillman Honorary Chairs: Jay Elliott, Dawn Pulliam, and Laura Torode Valley Sponsor: Turner Construction Company Foundation

Honorary Chairs: Maya Brown Zimmerman and Beth Utz Sponsors: Cleveland Clinic, Terumo Aortic, Alpha Phi Omega

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Winter 2022