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July 2026

Driving for DEFY Golf Tournament

2026 marks the 12th anniversary of the Driving for DEFY golf outing! Together, we have raised over $160,000 in support of the DEFY Foundation’s mission to enable the rapid discovery of viable treatments and a cure for VEDS by serving as the connective tissue between researchers, pharmaceutical leaders, and the VEDS community. This year also […]
18 Jul
7:00 am - 12:00 pm
Pigeon Creek Golf Course
120th Avenue, West Olive, MI, 10195
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Teen Talk

This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in for a talk with other teens they can relate to.
20 Jul
7:30 pm - 9:00 pm
Zoom
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Kids Club

Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
21 Jul
7:00 pm - 9:00 pm
Virtual
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VEDS Parents (Under 18)

If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate.
22 Jul
8:00 pm
Virtual
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Camp Victory for Kids: California 2026

Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for kids with Marfan, VEDS, Loeys-Dietz, and related syndromes and their siblings to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, […]
26 - 31 Jul
4:00 pm - 10:00 am
Sierra Nevada Journeys - Grizzly Creek Ranch
5900 Grizzly Road, Portola, CA 96122
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LDS Connect International

Please Note: Due to Memorial Day (US), this group will meet on Thursday, May 28, 2026, at 2 pm EST. (instead of Monday, May 25, 2026) The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is […]
27 Jul
2:00 pm - 3:30 pm
Zoom
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