The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, the luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program. This luncheon aims to bring together supporters, volunteers, and stakeholders to share the impact these initiatives have had and continue to have in the community. Throughout the event, attendees will learn about the successes, stories, and future goals of these programs while enjoying a memorable and inspiring gathering. The luncheon promises to be an opportunity for connection, reflection, and hope, as well as a way to support and celebrate these important causes.

1^st Tuesday of each month at 8 pm Eastern Time

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with VEDS, please check out the Seeking Diagnosis group here. 

*Please note, every member wanting to join this VEDS Connect group should have a genetically confirmed diagnosis of VEDS to attend. We will request that you confirm that you have a VEDS diagnosis before admitting you to this group. We rely on your honesty to keep this a safe space for group attendees. If you do not have a genetically confirmed diagnosis of VEDS, please sign up for the Seeking Diagnosis and Newly Diagnosed group instead.*

The Marfan Foundation is pleased to offer Empowered Relief®️, a free 2.5-hour pain management course to our community members experiencing chronic pain. Instructor Kyle Davis, PhD, will lead this evidence-based program developed at Stanford University, focusing on reducing pain intensity and enhancing overall well-being through pain education, mindfulness, and self-regulatory skills like relaxation and cognitive reframing. 

You are warmly invited to join our support group for individuals diagnosed with Stickler syndrome. This group offers a welcoming space to connect with others who understand your experiences and share valuable resources and information.

Join us every first Wednesday of the month at 8:00 PM Eastern Time to share stories, find support, and build community. We look forward to seeing you there and creating a supportive environment together!

This group is for adults aged 18-50 with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and the sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that make life better for our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

Join the Walk for Victory movement! 

Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. 

Together, we raise awareness and help families get the best medical care from leading experts. 

Together, we help fund events and programs that improve the lives of our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more! 

YOU GET IT…

Let’s do it TOGETHER!

This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community.

This group meets on the 2nd Tuesday of every month at 6:00 PM Eastern.

Are you a parent or guardian of a child with early onset (previously called neonatal or infantile) Marfan syndrome? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with these conditions. This diagnosis is generally reached by the child having severe symptoms of Marfan syndrome at birth or shortly thereafter.
This group meets on the second Tuesday of every month at 8 pm EST.

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences.

* If your child is under 18, please register for the VEDS Parents Support Group *

This group meets on the second Wednesday of every other month from 7-8:30 pm