The Marfan Foundation

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The Marfan Foundation To that end:

• Zero Tolerance Policy: We do not tolerate hate speech, harassment, personal attacks, discriminatory language, or disrespectful dialogue.
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The Marfan Foundation drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with
genetic aortic and vascular conditions. The Marfan Foundation drives research, education, and support while building community to save lives, improve outcomes, and empower all people living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related conditions to thrive.



Community Guidelines and Disclaimer

The Marfan Foundation is committed to maintaining a safe, respectful, and inclusive environment across all our digital platforms. Any content that violates these standards may be removed, and offending users may be blocked or reported.

• Shared Content Disclaimer: From time to time, we may share content created by our community members, including stories, testimonials, and social media posts. The views and opinions expressed in such content are those of the individuals and do not necessarily reflect the views, policies, or positions of The Marfan Foundation. By engaging with our digital platforms, you agree to abide by these guidelines and contribute positively to our community.

📆 It's National Estate Planning Awareness Week. We know that making a will isn't always easy - emotionally and financial...
10/21/2026

📆 It's National Estate Planning Awareness Week. We know that making a will isn't always easy - emotionally and financially. But this week is a reminder that it's an important, necessary task.

Through our trusted online tool, you can create a will online for free in about 20 minutes. It’s a simple step toward documenting your wishes and gaining peace of mind: Get started: https://frwill.link/marfan1026

💗 LET’S SHOW OUR SUPPORT IN PINK! 💗Tomorrow, our Marfan community member Cacharel will undergo surgery, and we’re asking...
10/20/2026

💗 LET’S SHOW OUR SUPPORT IN PINK! 💗

Tomorrow, our Marfan community member Cacharel will undergo surgery, and we’re asking everyone to wear pink to show her she’s surrounded by love and support.

Let’s flood our feeds with pink and let Cacharel and her family know we’re thinking of them and cheering them on! 💗

Cacharel and her sister, Danielle, both live with Marfan syndrome. Cacharel is pictured here with her children.

Their family’s story was recently featured on https://ow.ly/WOwF50ZZoir: https://ow.ly/Pj0a50ZZoiq

200,000 life-saving dollars!!! At the St. Louis Walk for Victory, Dr. Alan Braverman (our Board-Chair elect) announced t...
10/19/2026

200,000 life-saving dollars!!! At the St. Louis Walk for Victory, Dr. Alan Braverman (our Board-Chair elect) announced that the event had its most successful year EVER!

83 cents on every one of those dollars powers research, education, support group, resources, Camp Victory and more - that's 8 cents more than the average outstanding non-profit.

THANK YOU to our St. Louis community! You did it! Together, you're fueling hope for the Marfan, Loeys-Dietz, VEDS, Stickler and related conditions communities. HOORAY!

This is the second time CV is taking on the NYC Marathon. But running with TEAM VICTORY is special. "Now that I'm a dad ...
10/19/2026

This is the second time CV is taking on the NYC Marathon. But running with TEAM VICTORY is special. "Now that I'm a dad of two boys, I want them to see strength firsthand; that they can be brave and achieve any of their goals. Being a dad brings my motivation to an all-time high. I am proud to support the Marfan Foundation!"

Support CV and Team Victory: https://give.marfan.org/fundraiser/7275946



TCS New York City Marathon

Team Victory is taking on the 50th NYC Marathon!Natalia De la Garza is running for her six-year-old niece who was born w...
10/18/2026

Team Victory is taking on the 50th NYC Marathon!

Natalia De la Garza is running for her six-year-old niece who was born with Vascular Ehlers-Danlos Syndrome (VEDS). "Sofía María is so much more than her diagnosis. She is smart, joyful, loving, and above all, incredibly brave. Her strength inspires everyone who knows her. I will be running all 26.2 miles to help give her, and every person living with VEDS, hope for a brighter and healthier future. "

We're rooting for you, Natalia! ❤️

Support Natalia and Team Victory: https://give.marfan.org/fundraiser/7388051



TCS New York City Marathon

Professionals: Explore the latest experimental and clinical data!REGISTER NOW for the Oct. 20 webinar: https://www.gene...
10/17/2026

Professionals: Explore the latest experimental and clinical data!

REGISTER NOW for the Oct. 20 webinar: https://www.geneticaorticnetwork.org/webinars/

The study team will discuss findings from mouse models showing that immune cell involvement begins early in the disease process—before major structural damage to the aorta is visible.

Don’t miss this opportunity to hear directly from the researchers about these emerging findings.



Ghent University
University of Tsukuba
Oregon Health & Science University (OHSU)

Super grateful to CNBC Cures for spotlighting Marfan Syndrome alongside the 30th anniversary of both Rent and creator Jo...
10/16/2026

Super grateful to CNBC Cures for spotlighting Marfan Syndrome alongside the 30th anniversary of both Rent and creator Jonathan Larson's passing from undiagnosed Marfan syndrome and related aortic dissection.

We appreciate Fredi Walker-Browne who is a tremendous advocate for Jonathan's memory and saving lives today in his honor and our friends at FINN Partners for volunteering their time to connect the dots.

Read the newsletter here: https://link.cnbc.com/public/47963046



CNBC RENTStories - The Podcast FINN Partners

Loeys-Dietz Syndrome Foundation Canada Fondation du syndrome de Loeys-Dietz thank you!
10/16/2026

Loeys-Dietz Syndrome Foundation Canada Fondation du syndrome de Loeys-Dietz thank you!

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22 Manhasset Avenue
Port Washington, NY
11050

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