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May 20, 2020

The Marfan Foundation and Loeys-Dietz Syndrome Foundation Join Forces

 

The Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for those affected by Loeys-Dietz syndrome. The Loeys-Dietz Syndrome Foundation will officially become a division of The Marfan Foundation on July 1, 2020.

“Joining forces with the Loeys-Dietz Syndrome Foundation solidifies what has been a collaborative relationship for years,” said Cory Eaves, chair of The Marfan Foundation Board of Directors. “I am most excited by the prospect of what we can do together to better support our community. The alignment across each of our mission areas –research, awareness, and support – is abundantly obvious. I have no doubt both organizations will grow stronger through the partnership.”

The Marfan Foundation has a rich history with the Loeys-Dietz syndrome community, as many people with Loeys-Dietz were initially diagnosed with Marfan. It was not until 2005 when Loeys-Dietz was first identified that many people were re-diagnosed. Over the years, The Marfan Foundation has provided programs and services, including presentations and workshops at the Annual Conference, to support the needs of those affected by Loeys-Dietz syndrome. Under this new collaborative relationship, these offerings will expand and there will be many new opportunities.

“There is a strong tie between Marfan and Loeys-Dietz, making this expanded relationship a great next step for both organizations as we collectively seek to provide education, awareness, and resources to more people affected by these conditions,” said Beth Utz, who helped to found the Loeys-Dietz Syndrome Foundation and currently serves on The Marfan Foundation Board of Directors. Beth, whose son, Alex, has Loeys-Dietz syndrome, continued: “This is an opportunity to keep the identity of the Loeys-Dietz Syndrome Foundation and strengthen it alongside The Marfan Foundation to maximize reach and impact for all.”

As a division of The Marfan Foundation, the Loeys-Dietz Syndrome Foundation will continue to operate with the guidance of its existing Medical Advisory Board and will add the staff support of a director, to be named at a later date. It will retain its logo and independent website, loeysdietz.org, and Facebook page. Staff from The Marfan Foundation will work with the director to expand opportunities in all mission areas – education, support, and research – as well as support fundraising.

A joint virtual Town Hall meeting is scheduled for June 3. Dr. Bart Loeys will present with Dr. Hal Dietz, who is a medical advisor to both The Marfan Foundation and the Loeys-Dietz Syndrome Foundation. The leadership of both organizations will share details and answer questions from interested community members. Town Hall registration is at bit.ly/Marfan-LDSFTownHall.