At Friday night’s Welcome Dinner and Awards Ceremony, attendees, speakers, medical professionals, board members, and staff gather for a buffet dinner and presentation of the Foundation’s historic awards to honor those who have helped make an important contribution to the Marfan syndrome, VEDS, LDS, and related conditions community.  

On Saturday, July 9, the General Session features the latest information on our progress over the last 40 years, including research on Marfan syndrome, VEDS and LDS; aortic and vascular surgery; physical activity; foot and ankle health; and mental health. 

In the afternoon, small-group workshops led by medical experts on Marfan syndrome, VEDS, LDS, Stickler syndrome, and related conditions provide an opportunity to have your questions answered by the experts on various topics related to your or your loved one’s diagnosis.  

A Creating Connections luncheon on Saturday provides an opportunity for attendees to network with others, by state or topic. 

On Saturday night, we will hold a Dessert Social. This fun event is for everyone and will feature games, music, dancing, and much more. 

At breakfast on Sunday, July 10, we will have a special presentation of our volunteer awards ceremony. It is a chance to exchange contact information with your new friends before heading off to Sunday workshops.  

After breakfast on Sunday, small-group workshops will continue with topics related to quality of life and peer-to-peer support. These workshops will feature coping strategies and activities you can continue to practice at home. There will also be several fun activities to build camaraderie with others who share the same interests. 

Teens (ages 13-18) have a complete program designed for their needs and interests. On Friday, July 8, the teens meet for a group dinner to get to know each other. On Saturday, July 9, they can ask their medical questions at a Q&A breakfast with several expert physicians before traveling to Disneyland for a chaperoned fun day in the park. That night, they get together for games and other activities. On Sunday, July 10, teens attend small-group workshops designed specifically for them. All activities promote friendship and self-esteem to complete their conference experience. Teens must be ages 13-18 on July 8, 2022 to participate in this program. Teens are free with a fully registered or scholarship adult.

The Marfan Foundation is thrilled to be able to offer this exciting off-site trip to Disneyland as part of our conference programs for children and teens! The safety and needs of all our participants are first and foremost, and we are working diligently with the park’s Disability Services, parents, and medical professionals to plan activities that are appropriate for children and teens with Marfan syndrome, VEDS, LDS, and related conditions. We’re continuing to work through all the details – including identifying rides that are suitable for individuals with aortic and vascular conditions, special entrances and wheelchair accessibility, limited wait times, providing a special air conditioned lunch, shady rest spots, and much more! There are so many ways to take in the magic of Disney and we are committed to providing a safe, fun, and memorable experience for everyone.

As parents, we understand you most likely have questions to feel more comfortable sending your child on the off-site trip to Disneyland, and we are happy to answer them all. Please click here for our FAQ document about the trip and be on the look out for our parents’ webinar that will address any of your other questions and concerns. In the meantime, if you have any questions that we haven’t covered or can’t wait please email Dominga Noe at dnoe@marfan.org or Andrea Friedman at afriedman@marfan.org.

Kids (ages 5-12) also have a complete program designed for their needs and interests. On Friday, July 8, the children meet for a group dinner to get to know each other, participate in ice breakers, and do fun activities. On Saturday, July 9, they travel to Disneyland for a chaperoned fun day in the park. On Sunday, July 10, children get the chance to create a graphic novel or other form of creative expression, attend an age-appropriate mental health workshop, and have their questions answered by expert physicians. Children must be ages 5-12 on July 8, 2022 to participate in this program. Children are free with a fully registered or scholarship adult.

The Marfan Foundation is thrilled to be able to offer this exciting off-site trip to Disneyland as part of our conference programs for children and teens! The safety and needs of all our participants are first and foremost, and we are working diligently with the park’s Disability Services, parents, and medical professionals to plan activities that are appropriate for children and teens with Marfan syndrome, VEDS, LDS, and related conditions. We’re continuing to work through all the details – including identifying rides that are suitable for individuals with aortic and vascular conditions, special entrances and wheelchair accessibility, limited wait times, providing a special air conditioned lunch, shady rest spots, and much more! There are so many ways to take in the magic of Disney and we are committed to providing a safe, fun, and memorable experience for everyone.

As parents, we understand you most likely have questions to feel more comfortable sending your child on the off-site trip to Disneyland, and we are happy to answer them all. Please click here for our FAQ document about the trip and be on the look out for our parents’ webinar that will address any of your other questions and concerns. In the meantime, if you have any questions that we haven’t covered or can’t wait, please email Dominga Noe at dnoe@marfan.org or Andrea Friedman at afriedman@marfan.org.