The Marfan Foundation

06/06/2026

Is there a young person in your life who wants to know more about their own health and wellbeing alongside a connective tissue condition? Don't miss their chance to talk to the experts.

Register now: marfan.org/conference

Dr. Iannucci and Dr. Liang will have an open conversation with our younger community members:
For kids ages 9-12
JUNE 17 / 7:00 PM ET

For teens ages 13-18
JUNE 17 / 6:00 PM ET

06/04/2026

From scientific breakthroughs to life-changing connections, our community has come together to accomplish so much over the past 45 years.

Read our "45 Years of Impact" feature on pages 8-10 in Connective Issues, and then dive into the full issue for more stories, updates, expert insights, and community news. https://digitaledition.pub/wc/the-marfan-foundation/Connective-Issues/Spring-Summer-2026/

06/04/2026

🎉 For 45 years, the Marfan Foundation has been driving progress for people living with Marfan syndrome and related conditions like Loeys-Dietz, VEDS, and Stickler.

In honor of our 45th anniversary, consider starting with a gift of $45 and be a part of what comes next! When your support our new Annual Fund, you fuel research, education, resources, and community programs that empower our community to thrive.

❤️Give today: marfan.org/annualfund

06/03/2026

Our Global Virtual Conference is less than two weeks away. Want to hear from Dr. Doyle all about eye issues? There's only one way: sign up today!

marfan.org/conference

When you are provided with the chance to choose your sessions, you can select Eye Issues and Key Management Considerations happening on June 16 at 4:00 PM ET.

06/02/2026

🌴✨ A dream getaway with a purpose.

Bid on an unforgettable 4-night stay at the legendary Round Hill Hotel & Villas in Jamaica, featuring a private 6-bedroom Estate Villa, dedicated staff, gourmet breakfasts, private beaches, and more.

Can’t attend Heartworks NYC one week from today on June 9? You can still submit a proxy bid through June 9 by emailing [email protected].

Every bid helps support the Marfan Foundation’s mission to help more people

Learn more: marfan.org/NYCgala

06/02/2026

The Marfan Foundation family is a welcoming family. 💜💙❤️💚 🏳️‍🌈🏳️‍⚧️💚❤️💙💜

06/01/2026

Join Dr. Pyeritz and make your gift to our new Annual Fund, today. Your contribution will have 2x the impact, thanks to a generous gift from a donor who will match your investment dollar for dollar - only through June 30th!

Give now: marfan.org/annualfund

Fund the research, programs, support, and community that will help more people for the next 45!

05/31/2026

GET CONNECTED!

The latest issue of the Marfan Foundation’s official magazine is out. Read it here: marfan.org/connective-issues

It's packed with expert insights, groundbreaking research, compelling stories, Foundation updates, and more. Celebrate our 45th Anniversary, explore our new exercise and physical activity resource, and learn about dissections beyond the aorta.

05/31/2026

Do you live with chronic pain? Therapist Doré Schubert - who lives with Marfan syndrome - has some tips for coping and thriving.

https://marfan.org/blog/3-ways-therapy-can-help-you-cope-with-chronic-pain/



Thanks so much, Doré Serein Therapy

Doré Schubert knows well the emotional toll of living with chronic pain. Diagnosed with Marfan syndrome at age two, she did not begin experiencing chronic pain until nearly 30. When it arrived, so did waves of grief, anger, and anxiety about the future. But over time, Doré developed tools to cope ...

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...