Connective Issues Fall 2022

GRASSROOTS COMMUNITY WALKS TURN INTO INTERNATIONAL AWARENESS AND FUNDRAISING SUCCESS

In 2013, the Foundation launched the Walk for Victory in two cities to raise awareness for Marfan, LDS, VEDS, and other genetic aortic conditions; celebrate and honor the community; reach new areas; and raise funds. Over the years, the Walk initiative has experienced exponential growth resulting in increased awareness and community bonding across the country and, with the Global Walk for Victory, across the world. Last year, our Walk for Victory events attracted more than 4,000 people in 19 cities and all Walks exceeded goals to provide support for essential programs and research. Thanks to our hospital partners, corporate sponsors, medical and community chairs, and amazing teams that represent Marfan, Loeys-Dietz, and VEDS, in 2021-2022, this signature program raised more than $1 million for the first time ever. We are excited to continue to expand the Walk for Victory in 2023 with two new cities – Ann Arbor, MI, and Denver, CO. To find a walk near you, visit Marfan.org/walk .

"The New York Walk for Victory has been our family's main fundraiser since our daughter, Lulu, was diagnosed in 2016. The Walk not only helps us spread awareness through our fundraising efforts but has helped us meet so many other local families and Marfan specialized doctors in the tri-state area. It feels so nice to have a local community that can relate and understand what your family might be going through." - Sarah Maher with her three girls and their cousin at the New York Walk for Victory.

“The Northern California Walk for Victory really focused on growing stronger together, providing you with the help you need to advocate for your child or loved one and connecting you with other parents and families. The best feeling was knowing you are not alone on this journey! There was so much support from everyone and a tremendous outpouring of love. You can do this. Your child or loved one can do this too. You set a great example of strength for your family!” - Linda Tapia participated in the Northern California Walk for Victory for the first time this year. Her son, Marko Olivia, has Marfan syndrome. (Tapia family, left, pictured with a family they met at the walk.)

“The Walk has been instrumental for our family in making connections with the local Marfan community here in Ohio. The Walk has also given us a great excuse to get together with family and friends and spread awareness about connective tissue disorders. I am really proud of the work we have done to help fund critical research projects and continue spreading awareness of Marfan syndrome and related disorders." – Shannon Mace with her family at the Cleveland Walk for Victory.

“It warmed my heart to see the sense of

community we already had with people we had never met. It was so empowering to see how many people

came out to support Lincoln and everyone else with Loeys-Dietz, Marfan, and VEDS. I did not realize how isolating, as a mother, it felt never having met anyone else with LDS. Due to the Walk for Victory, we were finally able to meet other people, in person, with Loeys-Dietz syndrome... it was like a breath of fresh air.” - Julie Hervatin attended the Phoenix Walk for Victory for the first time this year. Her son, Lincoln, who was recently diagnosed with LDS, celebrated his 2nd birthday on the same day.

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Marfan.org