Connective Issues Spring/Summer 2025

FOUNDATION SELECTED AMONG 50 BEST NONPROFITS TO WORK FOR This spring, the Marfan Foundation was selected as one of the 2025 Best Nonprofits to Work For – a distinction awarded to only 50 nonprofits annually. “We are incredibly proud of our staff for earning recognition as one of the Best Nonprofits to Work For in 2025. Every time I engage with our team, I am struck by their unwavering dedication, tireless efforts, and the genuine love they have for our community,” said Foundation Chair Bert Medina. The Best Nonprofits to Work For survey and awards program identifies and recognizes the best employers in the nonprofit industry, benefiting the industry’s economy, workforce and businesses. Nonprofits from across the United States entered the two-part survey process and 50 were chosen. “Our team brings not only immense talent and expertise but also incredible heart to our mission every day,” said Michael L. Weamer, Foundation President and CEO. “I am immensely proud to work alongside such a committed group, united by a shared purpose: saving lives and empowering our community. Together, with our extraordinary volunteers, we can enhance quality of life, extend longevity, and ultimately pursue cures for those affected by genetic aortic and vascular conditions.”

 The VEDS community celebrated five years of the VEDS Movement after the WFV

gets you and your life. Coming to the walk brings that sense of community to my son, but also, it’s been important for me to be surrounded by other moms who understand.” In 2020, Shelley Hartman created Team Peggy to honor her mother who passed away from complications of Marfan syndrome. She and her family want to help fund research and spread awareness for Marfan syndrome and make the two-hour trip to Houston each year to be a part of WFV. “I felt it was too late for my mom, but research might help me or definitely my son,” said Shelley. “My hope is to find a cure, and right now, I want to advance research. The progress made since my mom had her aortic dissection is amazing. And awareness is so important. People need to know what these conditions are and get diagnosed sooner.” “I also absolutely love seeing my doctor, my son’s doctor, and my mom’s surgeon there walking with us and supporting Marfan research.” Curtis Bates first learned about the Houston WFV from a VEDS Facebook group. He attended with his grandchildren, including Max, who has VEDS. “If I can help raise funds for research that could help prevent a parent from losing a child, or a child from losing a parent or sibling, it is important to me,” Curtis said. “I hope that advances are made in treatment so Max can lead a long and normal life.” Curtis’s favorite part of the walk each year has been getting to know others in the VEDS community. “I have made a lot of friends in the VEDS community,” said Curtis. “I love my VEDS people and hope we can continue to get together to raise money, raise awareness, and enjoy the fellowship we have.”

Get connected to your community! Find a Walk for Victory near you at Marfan.org/walk .

 Kelli Coselli, Mandy Shaw, Dr. Shaine Morris, and Steve Beckholt were honored for 10 years of support

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Spring/Summer 2025