Know the Signs, Fight for Victory

VEDS Teams are Historic Top 3 at 2024 Tampa Walk for Victory

VEDS Teams at Tampa Walk for Victory 2024

For the first time in The Marfan Foundation’s Walk for Victory (WFV) history, the top three fundraising teams represented the Vascular Ehlers-Danlos (VEDS) community at the Tampa regional event on Saturday, January 6.

“This remarkable achievement reflects the strength of our community and the vital role of these gatherings in connecting those with rare conditions. A heartfelt thank you to all who contributed to this success!” said Ryan Rodarmer, director of The VEDS Movement, a division of The Marfan Foundation.

Though bad weather marked the start of the day, as community gathered, the weather cleared for an amazing event that was attended by more than 175 people and raised over $40 thousand dollars — achieving the event’s goal.

“The Tampa Walk for Victory was a great event,” said Medical Chair Dr. Marguerite “Peggy” Crawford. “We had terrible weather in the morning but so many families came out and brought the sun with them. It was wonderful that so many of our families had an opportunity to meet each other and raise funding and awareness for The Marfan Foundation.” Crawford is assistant professor, pediatrics Johns Hopkins Medicine and director, Cardiac MRI Program at Johns Hopkins All Children’s Heart Institute in St. Petersburg.

Funds-raised advance research, education, programming, support, camps for children, and help save lives and improve quality of life for people living with rare genetic aortic and vascular conditions like Marfan syndrome, Loeys-Dietz syndrome, and VEDS. Most of all, the event provided the chance to deepen community connections.

“I had never actually met any other children with VEDS so it was really wonderful to build that community for my children,” said participant Monica Kile.

The event, which took place at the Highland Avenue Water Works, included the oldest known individual to attend a WFV from the VEDS community at 78. Teams turned out due to many personal connections with the Foundation’s mission, including in tribute to the memory of loved ones like young people who recently tragically passed due to VEDS Leah Marie Burke and Graham DiMartino.

Brooke Daczewitz accepts the In Memory of Leah Marie Burke Team’s award as one of top three fundraising teams. Brooke is pictured with WFV staff lead Kimberly Huddleston and Foundation President & CEO Michael L. Weamer.

Brooke Daczewitz, Leah’s college roommate and Team Captain of the In Memory of Leah Marie Burke Team, said of the event “Sometimes we only think about family but friends can also create a team and help spread the love. It was a very special day, and I was honored to have connected with the VEDS community. It was a beautiful way to honor our girl and spread awareness.”

“Graham’s unexpected and sudden passing in February 2023 due to VEDS was a devastating loss for our family,” said a statement on the Graham’s Fam team page. “In his loving memory, we hope we can help save lives and improve the quality of life of individuals with genetic aortic and vascular conditions including Marfan, LDS, and VEDS.”

Currently, thanks to the support of our community and events like Walk for Victory, The Marfan Foundation is funding $2.3 million in research grants that offer hope for a brighter medical future for individuals living with genetic aortic and vascular conditions, empowering affected people to achieve the best quality of life and longevity possible in partnership with their healthcare providers.

Karen and Michael Weamer attend Tampa WFV with grandchildren

The Foundation’s CEO & President Michael L. Weamer, who participated with his family at the walk, reflected on the community’s accomplishments.

“It was great being with our community and meeting many of our medical leaders from Johns Hopkins, All Children’s Hospital and UF Health in what turned out to be a beautiful Saturday in Tampa. Seeing old and new friendships blossom between our community members across condition connections, and the awareness and funds raised was terrific. On a personal note, my wife, Karen, and I were especially pleased to be with four of our grandkids who took part in their first walk!”

“Congratulations to everyone who made it such a special day, and to those who joined us in spirit, as well!” said Weamer.


VEDS is a rare genetic disorder that impacts the body’s connective tissue and affects about one in 40 to 50 thousand people in the United States. Connective tissue holds all the body’s cells, organs, and tissue together. It also plays an important role in helping the body grow and develop properly. VEDS can be fatal due to complications that include aneurysms, artery dissections, and arterial tears (including the aorta), as well as sudden lung collapse, bowel perforations, and uterine rupture during pregnancy.

For media inquiries, contact April Dawn Shinske, Chief Marketing & Communications Officer, The Marfan Foundation

Avatar photo

The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

Share to