The Marfan Foundation

09/02/2026

Do you know the signs of aortic dissection? Do your loved ones? People living with genetic aortic and vascular conditions like Marfan, Loeys-Dietz, VEDS and related have on average a 250x greater risk of aortic dissection than the general population. That fact is always sobering, but it is most dangerous before people are diagnosed with a condition and are unaware of risk. With medical monitoring, like regular CT scans, people living with connective tissue conditions have the best shot possible at avoiding aortic emergencies.

Learn more: marfan.org/aorticawareness

08/30/2026

Need to learn more about living your best life alongside Marfan, Loeys-Dietz, VEDS, or Stickler syndrome? We've got you! Check out this 2026 Global Virtual Conference playlist - chock full of info. from the experts and fellow community members. Don't miss it!

https://www.youtube.com/playlist?list=PL15Tld-UNc9vSQ278O43NrwqhGF38OAat

08/29/2026

See our friends at Rock from the Heart at this can’t miss event in Duluth!

Meet the Speaker | Nicole E. Worden, MD, FACC, FSCAI

Chest pain.
Most of us know it can be serious. The harder question is knowing what to do when it’s happening to you or someone you love.

At Aortic Ed, Dr. Nicole Worden, interventional cardiologist, Heart and Vascular
Division Chair and Chief of Staff at St. Mary’s Medical Center, will present:
When Time Matters: Acute Chest Pain

Dr. Worden has spent years caring for patients in cardiovascular emergencies. She previously served as Medical Director of Essentia Health’s STEMI program and led statewide initiatives focused on improving care for patients experiencing acute heart attacks.

This is a conversation worth having before you ever need the information.
What does acute chest pain tell us? When is it an emergency? And why can acting quickly make such a difference?

Friday, October 9, 2026 | DECC Harborside | Duluth
Aortic Ed sessions are free and open to patients, families, caregivers and the community.
You’re also invited to stay for the reception and Survivors’ Dinner following the sessions.
Dinner: $45 | $35 for survivors

Essentia Health The Marfan Foundation

08/29/2026

👨‍⚕️ For Professionals: Don’t miss this informative session with University of Michigan’s Robert Pena, MD.

👉 REGISTER HERE: marfan.org/scienceinspain

Dr. Pena brings both professional expertise and lived experience to his work. His research focuses on Marfan syndrome, as well as the diagnosis and management of aortic disease in emergency and intensive care settings. He also lives with Marfan and underwent bilateral lens replacement and aortic root replacement as a young man.

🌎 This is just one of the opportunities to learn from leaders in the field at Science in Spain this October. Join colleagues from around the world for four days of cutting-edge science, expert presentations, and opportunities to connect and network with leaders in genetic aortic conditions.



Annabelle's Challenge Vascular EDS Charity
DEFY Foundation
European Society of Cardiology
University of Michigan

08/27/2026

Four Days in Barcelona — One Amazing Professional Opportunity

Calling all professionals interested in aortic disease! Arturo Evangelista, MD, PhD, is inviting you to Science in Spain, a four-day meeting bringing together leading experts in aortic disease from around the world. 🌎

Register here: marfan.org/scienceinspain

It’s a unique opportunity to hear from renowned experts, exchange ideas, explore new perspectives and make connections that can last well beyond the meeting.

Annabelle's Challenge Vascular EDS Charity
European Society of Cardiology
DEFY Foundation

📍 Barcelona
📅 October 4–7, 2026
🌎 Experts and colleagues from around the world

See you soon!

08/26/2026

Our Train for Victory endurance events support our life-saving mission! Sign up to run for someone you love! Email [email protected] for details.



*As always, please consult with your expert provider before taking part in any physical activity. Medical clearance is required for runners.

08/25/2026

Aortic Health Professionals: Don’t miss this unique opportunity to learn from one of the most influential and pioneering cardiologists of all time. Dr. Valentin Fuster has had a profound impact on cardiology, public health and Marfan syndrome research.

Register now for Science in Spain: marfan.org/scienceinspain

📅 Oct. 4–7 | Barcelona

See you soon for four days of world-class science, collaboration and connection with leading experts in aortic health.



Annabelle's Challenge Vascular EDS Charity
European Society of Cardiology
DEFY Foundation

08/25/2026

Research survey participation opportunity for community members:

A genetic counseling graduate student in the University of Arkansas for Medical Sciences (UAMS) College of Health Professions is conducting a research study to learn what factors affect how and when parents tell their child about a Marfan syndrome diagnosis. For more information and to complete the survey, visit https://redcap.link/marfan.

08/24/2026

Hey Cleveland - come out and be with your Marfan Foundation Family! We're just under a month away from the Cleveland Walk for Victory. Hint: it isn't an athletic event, it's more like a family picnic with something for everyone. We can't wait to be together!
Register now: marfan.org/walkcleveland

08/24/2026

Chris Ihde wants to pay forward into the future all that the Marfan Foundation has meant to his own wellbeing and that of his family. That's why he made an estate plan that remembers the Foundation in his will as a legacy of gratitude and hope.

Read Chris's story: https://marfan.org/blog/a-legacy-of-gratitude/

Try out FreeWill, a no-cost estate planning tool that allow you to create a will quickly on your own. The tool is offered free to our community to help foster peace of mind, whether or not you elect to include the Foundation in your plans as Chris did: https://frwill.link/marfan0826