The Marfan Foundation

05/30/2026

Talk About Someone Who "Just Gets It"!

We’re excited to introduce a new voice in our community: Doré Schubert, a Canadian therapist living with Marfan syndrome who brings both professional insight and lived experience to conversations around mental health, chronic illness, resilience, and coping. Read her story here and keep your eyes open for more advice and insights from Dore on the Foundation pages.

Serein Therapy

Doré Schubert was diagnosed with Marfan syndrome at age two after experiencing a dislocated lens. By age 16, she underwent her first spinal fusion surgery for scoliosis.  “Still, I lived a pretty normal life and didn’t think too much about it. I did pretty much everything that everybod...

05/30/2026

Happening now UVA Health 2026 UVA Multidisciplinary Aortic Symposium, sponsored in part by The Marfan Foundation We are so grateful for the way in which UVA is focusing on genetic aortic conditions.

05/30/2026

If you want to hear more from Dr. Black, register for Conference now so you don't miss Beyond the Aorta: Understanding Your Vascular System on June 18 at 3:00 PM ET

🗓️ marfan.org/conference

05/28/2026

Caregivers need support, too.

“You are probably carrying more than people can see,” says Doré Schubert, a therapist living with Marfan syndrome. “You matter in this too.”

Tune in to Doré’s words of encouragement for parents, partners, family members, and others caring for a loved one with Marfan, Loeys-Dietz, VEDS, Stickler, or a related condition.

Watch her message, and visit marfan.org/mental-health for more resources.

Serein Therapy

05/27/2026

✔️ Sign up now: marfan.org/conference

Imagine connecting with someone living with a genetic aortic condition on the other side of the world. Despite the distance, they understand your journey in ways few others can—and that connection grows into a treasured friendship, a trusted source of support, and a valuable new perspective.

No matter where you are, you can learn, connect, and thrive through the Marfan Foundation’s Upcoming Global Virtual Conference.

Over four days, explore key aspects of living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions through sessions on medical care, mental health, emerging research, and more. With programming for adults, teens, and children, plus opportunities to build lasting connections, this event brings our global community together.

05/26/2026

“A diagnosis of Marfan or a related condition can sometimes bring a mix of emotions that don’t always make sense together,” says Doré Schubert, a therapist living with Marfan syndrome. “Relief at having answers. Fear about the future. Or grief for the life you imagined.”

Doré understands these feelings firsthand.

Check out her message of hope and understanding for the connective tissue community.

And stay tuned to Foundation channels — Doré will be sharing more insights, tips, and wisdom with our community. For other mental health support visit marfan.org/mental-health

Serein Therapy

05/26/2026

💚 Northern California: May 30th marfan.org/walknorcal

💜 Philadelphia: May 30th marfan.org/walkphiladelphia

💙 Pacific Northwest: June 6th marfan.org/walkpnw

❤️ Milwaukee: June 7th marfan.org/walkmilwaukee

💚 Boston: June 14th marfan.org/walkboston

💜Chicago: June 20th marfan.org/walkchicago

💙Central Virginia: June 27th marfan.org/walkvirginia

❤️Michigan: June 27th marfan.org/walkmichigan

💚New Jersey: June 28th marfan.org/walknewjersey

05/25/2026

Today in the U.S., we pause to honor and remember the brave individuals who made the ultimate sacrifice, and the loved ones—past and present—who carry the weight of that loss.

05/25/2026

Marfan in the news: we thank People for sharing three separate Rent stories mentioning Marfan, the latest with a focused awareness feature (note: this post discusses loss of life):

“Weil emphasizes that Larson's tragic death helped others who were also unknowingly living with Marfan syndrome.

‘Amazingly, he wasn't done saving lives or changing lives while he was alive, as a result of his Marfan diagnosis. I can't imagine the number of lives that were saved around the world when people saw Jonathan and saw themselves, by just seeing his appearance, that they had similar physical traits, and between the work the Marfan Foundation did with the Larsons and the work that's gone on and over the years, over the many decades,’ Weil shares.

‘In some ironic, tragic, beautiful way, the gift he left us all with, not only Rent but people's ability to see themselves in Jonathan, and change their outcome,’ Weil adds.”

https://people.com/rent-music-director-tim-weil-says-jonathan-larson-certainly-wouldve-made-changes-exclusive-11978022

Tim Weil reflects on Jonathan Larson’s 'Rent' legacy, his creative process, and how his death raised awareness of Marfan syndrome.

05/24/2026

Trying to balance your mental health with your physical health while living with a genetic aortic condition isn’t easy.

Watch this webinar from our 2024 Global Virtual Conference to learn some strategies around: focus on lifestyle factors, self talk, actions, mindset, emotions, medical team, social circle and support system, habits, thoughts and reactions to them.

https://ow.ly/cK4l50Z3CTb