The Marfan Blog

The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related disorders.

Recent Posts

7 Simple Fundraising Tips You Can Use Today

Nov 20, 2015 by The Marfan Foundation

“Where there is unity there is always victory.” –Publilius Syrus

Our nationwide Walk for Victory program is achieving just that…victory.

Roughly 200,000 people in the United States are living with Marfan syndrome or a related connective tissue disorder.  Since 1981, The Marfan Foundation has observed, and been a part of countless victories in the Marfan syndrome and related disorders community.

Topics: Volunteer, Marfan Community, Team Victory

Q & A with Isaiah Austin

Feb 23, 2015 by The Marfan Foundation

It’s hard to believe that it’s been less than eight months since Isaiah Austin, the former Baylor University basketball standout was diagnosed with Marfan syndrome and had to withdraw from the NBA draft. Soon after the diagnosis, Isaiah attended our annual family conference and met so many people from our Marfan syndrome and related disorders community. Since then, he has continued to raise awareness about Marfan syndrome through activities from coast-to-coast. All while he works to complete his undergraduate degree at Baylor. We recently had an opportunity to ask him some questions about his Marfan journey so far.

Topics: Marfan Awareness, Marfan Community

Meet a Marfan Researcher - Silvia Smaldone, PhD

Dec 26, 2014 by The Marfan Foundation

One of the most satisfying aspects of being part of this community is meeting the people who work hard to create a brighter future for all those living with Marfan syndrome and related disorders. Earlier this month, we had a chance to catch up with one of our senior investigators, Silvia Smaldone, PhD, from the Icahn School of Medicine at Mount Sinai, to learn more about her research. Watch the video and you'll see how her commitment and passion really shine. She says it best: "Do the right thing and you can really solve mysteries."

Topics: Research

Adopt-A-School Victory Challenge Mini iPad Winner

Nov 11, 2014 by The Marfan Foundation

This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians, grandparents, and any adults to bring our teacher and school nurse resources to their local schools. We randomly selected one of the participants in the challenge as the winner of an iPad mini... and the winner was Eva Marie Seijo, of Virginia Beach, VA.

Topics: Volunteer, Marfan Awareness, Marfan Community

Julie Kurnitz’s Marfan Story Gives Hope to Others

Aug 14, 2014 by The Marfan Foundation

Ten years ago, we lost a dear member of our community, Julie Kurnitz. Julie served on our Board of Directors, appeared in our videos, was a founder of the Marfan Artists Project (which is now our Heartworks gala), led conference workshops, spoke to doctors and nurses about Marfan syndrome, and, was featured in print and broadcast media to raise awareness of Marfan syndrome. More than that, she was an inspiration to so many in our community as she gave so much of herself, with a smile on her face, even as she faced multiple medical challenges of Marfan syndrome.

Topics: Marfan Conference, Marfan Community