Three symposiums were held this autumn geared toward helping community members connect with one another and with the experts. The events in Puerto Rico, near Boston, and in New Jersey gave attendees the chance to hear expert lectures, ask questions, and spend informal time together at Creating Connections luncheons, as well.
“This was a wonderful opportunity to meet patients, family members, and health care colleagues…I was impressed with the motivation to learn and the dedication of everyone I met,” said Foundation Board Member Dr. Juan Bowen who attended the Puerto Rico event as an expert guest. “What truly was remarkable for me…was a couple of families thanking me for explaining things in Spanish that they had not had the chance to listen to before. That for me was the highlight of the weekend!”
At the New England event, patient perspective speaker Todd Krueger, a former member of the Foundation’s Board of Directors, provided an introspective look at growing up with Marfan syndrome. Diagnosed in 1994 at 24-years-old and an aortic dissection survivor, Todd spoke from the heart on his experience, hoping to offer answers to community members.
“Everybody’s different…my condition is not the same as the person next to me,” said Todd. “Being able to hear different perspectives, to talk to actual doctors that will treat you, even if they are not going to treat you today, but they might treat you in the future, having those connections are invaluable because there are not that many people on the planet that treat this.”
Rachel, a participant who attended in New England after recently having been diagnosed with VEDS alongside her 7-year-old son, shared the symposium’s impact for her and her family.
“It was important for me to come,” said Rachel. “To meet the doctors that’ll be our doctors is one of the biggest things…and making human connections and connecting with the other parents and people that have different connective tissue conditions. My biggest goal is making the connections with people,” said Rachel.
In New Jersey, in addition to wonderful community connections and informative expert sessions on a host of topics important to people live with genetic aortic and vascular conditions, the event’s hallmark was robust Q&A sessions throughout the day that gave community members the opportunity to share what was most important to them and hear from multiple subject-area experts at once.
We are so grateful to our partners at Atlantic Health, Morristown Medical Center, in New Jersey; Lahey Hospital in Massachusetts; and the Ponce Medical School Foundation, Inc. in Puerto Rico for co-hosting these essential events with the Foundation.
We will have several symposiums coming up during spring. Save the dates for symposiums on April 5, 2025 in Northern California at Standford Health Care (registration information coming in early 2025) and in Michigan at University of Michigan Health (registration is open).
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.