The Marfan Foundation

09/08/2026

Want to hear about the cutting-edge technologies shaping the future of care?

Renowned cardiologist Mark Lindsay, MD, PhD, will share the latest advances in genetically triggered arteriopathies during a keynote session at Science in Spain, a four-day conference bringing together leaders from across the field.

Register now: marfan.org/scienceinspain

Don’t miss this opportunity to learn from the experts at the forefront of discovery and innovation.



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

09/07/2026

We wish every member of the Marfan Foundation Family a relaxing, enjoyable, and fun Labor Day.

09/06/2026

🏃 There’s only ONE SPOT left to run the New York City Marathon with Team Victory!

If you’ve been dreaming of running the NYC Marathon with an incredible team in support of an amazing cause, this is your chance! If you’re interested in claiming the final spot, please email Alyssa at [email protected]

Want to support Team Victory outside of running? Come join us along the course to cheer on participants! Be part of the excitement as we celebrate every mile and rally our runners to the finish line. Learn more and find out how you can support the team here: https://give.marfan.org/campaign/2026-new-york-city-marathon/c781481

09/05/2026

Once you connect with the Marfan Foundation, you will never be alone again. Our Thrive Connectors are here for you every day - people like Stephanie who directs our Help & Resource Center.

Stephanie combines professional experience with lived experience to help guide those who reach out to the Help & Resource Center with medical questions. Her background is in pediatric nursing, and her husband and children live with Marfan syndrome.

"The Help & Resource Center felt like a natural extension of both my professional and personal life."

🔖Read more about Stephanie here. https://marfan.org/blog/meet-stephanie-nurse-mom-and-help-resource-center-advocate/

Our Help & Resource Center is a free service for anyone touched by Marfan, Loeys-Dietz, Vascular Ehlers-Danlos, and Stickler syndromes - or a related condition. Steph and the team can help you connect with experts, find care near you, connect with community members with similar experiences, get support, and more.

Connect at marfan.org/ask

09/05/2026

🔬 What could your research make possible?

Recent Foundation-funded researchers have recently explored everything from an aorta-on-a-chip for Loeys-Dietz syndrome to potential new biomarkers and therapeutic targets for genetic aortic and vascular conditions.

Now, we’re looking for the next big ideas.

The Marfan Foundation is accepting applications for three research funding opportunities:

🔬 Innovators Award — $100,000 over two years
🌱 Career Development Award — $100,000 over two years
🧬 Victor A. McKusick Fellowship — up to $150,000 over two years

Could your research be next?

👉 Explore the opportunities and apply here: https://marfan.org/research/grants

📅 First deadline: October 19, 2026

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!