Connective Issues Winter 2024

TEAM VICTORY: Taking Strides for a Cause! Ten years ago, the Foundation became a Charity Partner with the TCS New York City Marathon and put out a call for runners willing to take on the largest marathon in the world while raising awareness and funds for genetic aortic and vascular conditions. Team Victory was born, and since then, we’ve been amazed with members of our community who have completed this challenging race. Each has their own unique story and reasons why they ran, but all share a common cause.

Dr. Elvis Danne Jr., DPM, AACFAS, DABPM, assistant professor of podiatry in clinical surgery at Weill Cornell Medical College, finished the 2023 TCS New York City Marathon on November 5. He decided to take on the challenge to honor his friends and fellow runners, Grace Ehrbar, who has VEDS, and Robyn Li, whose two children have a connective tissue condition. “Due to my profession, I knew about VEDS, Marfan, Loeys Dietz, and EDS and the personal connection to those conditions really changes things,” said Dr. Danne. “When miles during the marathon became di ffi cult, I would look at the zebra bracelet and the Marfan singlet as a reminder to keep pushing.” Congratulations to the TCS NYC Marathon Runners. Together, they exceeded their goal of $40,000 and raised over $70,000 to help further the mission of the Foundation!

• Jenny Braverman • Dr. Elvis Danne Jr. • Sondra Dickey • Sofia de la Garza

• Thomas Hughes • Julia McNeill • Allison Pullins • Neal Richardson

• Nick Talbert • JackToce • Lyndsey Toce

 Dr. Elvis Danne Jr.

“After completing the marathon, I felt an overwhelming sense of accomplishment and joy,” said Allison Pullins who ran with her husband, Neal Richardson, to honor their son James, who has Marfan syndrome. “It wasn’t only about crossing the finish line, but rather the journey and the incredible support I received along the way. Every step I ran was dedicated to the strength and resilience of the Marfan community.”

 Allison, Neal, Naomi, and James.

If you would like to be a part of Team Victory 2024, contact Alyssa Aiello at aaiello@marfan.org.

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