No need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.

By Tammy

I was diagnosed with Loeys-Dietz Syndrome in March of 2020 at 53 years old. My father died after his second open-heart surgery when he was just 32 years old.  Loeys-Dietz had not yet been identified in 1971, but the geneticist believes he suffered from the syndrome as well.

By Missy

I am one of the lucky ones... On November 19th, 2022, I was rushed to Renown Hospital in Reno, NV where I survived an emergent open repair to a ruptured 8.7 cm abdominal aortic aneurysm. I had multiple blood transfusions and coded twice over a few hours. One minute I was working and the next I woke up days later in ICU. 

By Brenda

Our family discovered our LDS diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together this October. 

Thanks to the generosity of our supporters, the Foundation awarded five new research grants. These two-year grants include two Innovator Awards and three Victor McKusick Fellowship Awards. The research projects focus on aortic dissection and thoracic aortic aneurysms.

Stacey Watson has been selected by The Marfan Foundation to join its team as Director of the Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation. Stacey is also a member of the Loey-Dietz community.

In this two-minute video, Dr. Kim Eagle talks about the three things he wishes every emergency department caregiver knew about aortic emergencies. Please share with the healthcare providers in your life!

We are pleased to share that we recently reached an agreement to return to Atlanta for an in-person Conference July 10-13, 2025 which will again be hosted by our friends at Children’s Healthcare of Atlanta and Emory at their new medical campus.

I believe that my story is the perfect example of the power of awareness and education. Without those two things, a medical breakthrough, no matter how extraordinary, is rendered useless. My life, my daughter's, and future generations of my family will be followed by cardiologists, ensuring that aortic dissections do not suddenly and unknowingly take us away from our loved ones.

The Marfan Foundation has awarded its largest research grant in history, the Everest Award, as well as $600,000 in other new grants to physicians/scientists as part of its Research Grant program, bringing current total grant funding to $1,285,500. 

Growing up I assumed I was “normal.” I assumed my entire family was “normal.” For 36 years, I was not aware of Loeys-Dietz syndrome or that I was at risk from this genetic condition. In my school years, I suffered with severe allergies, asthma, and was diagnosed with a deviated septum after a spate of headaches at middle school.
Born in Telford in 1975, in Shropshire, England, I was the middle of three children.

I was born in 2004, exactly one year before Loeys Dietz syndrome found its name, so from the minute I took my first breath, I was a mystery. In comparison to my twin brother's healthy, squishy newborn frame, I was tiny and frail. My legs looked like they had been put on backward, and my fingers were crooked. Of course, everyone knew something was wrong, but no one in the world knew what that meant for me, what had happened, or how to fix it.

When our 12-month-old, Lincoln, was diagnosed with Loeys Dietz Syndrome, the first thing we and all of our providers thought about was what is Loeys Dietz syndrome and how do we treat it. A few said, "Its like Marfan syndrome, right?" We quickly learned through listening to lectures from previous conferences on the Foundation’s YouTube site that it was and so much more.

New guidelines for the diagnosis and management of aortic disease were published yesterday in the Journal of the American College of Cardiology and Circulation. These guidelines, which were created by a team of medical experts on behalf of the American College of Cardiology and American Heart Association, provide recommendations on the diagnosis, evaluation, medical therapy, endovascular and surgical intervention, and long-term surveillance of people with aortic disease based on evidence available in the literature and, in some instances, based on expert consensus opinions.

When Craig’s results came back negative for Marfan but positive for Loeys-Dietz syndrome we were so confused. We hadn’t heard anything about it, but after doing some research and talking to some of the best specialists in the states for this rare disease, we’ve come to know that it’s often referred to as Marfan’s evil cousin. Both are connective tissue diseases that cause weak tissue and aneurysms and dissections in the cardiovascular system. But Loeys-Dietz causes aneurysms and dissections throughout the body, not just the heart.

When Craig’s results came back negative for Marfan but positive for Loeys-Dietz syndrome we were so confused. We hadn’t heard anything about it, but after doing some research and talking to some of the best specialists in the states for this rare disease, we’ve come to know that it’s often referred to as Marfan’s evil cousin. Both are connective tissue diseases that cause weak tissue and aneurysms and dissections in the cardiovascular system. But Loeys-Dietz causes aneurysms and dissections throughout the body, not just the heart.

By Bridget Porter (Metz)

Thanks to a medical team that knew how to care for her condition, Yulia’s family is strong today. Yulia continues to learn and connect in ways that will make their tomorrows strong. Yulia’s family, their medical teams, and the LDS community – they are strongest together!

I'm still learning how to navigate the maze, but I'm finding my way with the help of many people. Like others have done for me, I hope to help others who are starting their own journey in the Loey-Dietz syndrome maze.

I am thankful that a doctor recognized the signs of Loeys-Dietz syndrome in my son and that now we KNOW. Knowledge is power, especially with this condition. Now that we know, we can take the proper precautions and monitoring, while living (mostly) normal lives.

By Tammy Asplund

I was diagnosed with LDS type 1 in March 2020, at 53 years old. But the story begins in 2000, with a visit to my son's pediatrician to get him ready for kindergarten.

By Rebecca Matte

Over the years, Rebecca Matte of Delray Beach, Florida, has been told she isn’t typical of people with Loeys-Dietz. Some doctors told her she didn’t look the part. Others told her she had Marfan syndrome.

If you look at his pictures, Riley looks like an average kid (if his shirt is on). He’s small but you would never know that this child has been through all the things he’s been through and still goes through all he does.

I want people to see Riley and see there is hope. As a parent of a child with a rare condition (or conditions), you might see a statistic on a piece of paper and feel hopeless. But then I want you to see Riley, out here beating every statistic and every odd, every day.

By Mehmet Tascioglu

The Marfan Foundation, which has funded 158 in research grants and initiatives since 1989, is proud to announce it has updated its research grant program to have a more significant impact on scientific advances to improve the lives of people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. The new grants are designed to encourage and support transformational science.

By Bridget Porter (Metz)