NEW YORK, May 20, 2020 /PRNewswire/ -- 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.
Marfan Syndrome and The Marfan Foundation
Marfan syndrome is a life-threatening genetic condition of the body's connective tissue. It affects the heart and blood vessels, the bones and the eyes. Knowing the signs is the key to early and accurate diagnosis and life-saving treatment.
The Marfan Foundation's mission is to save lives and improve the quality of life of individuals with Marfan syndrome and other genetic aortic conditions. The Foundation works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.
Learn more and get involved at www.marfan.org.
Loeys-Dietz Syndrome and The Loeys-Dietz Syndrome Foundation
Loeys-Dietz syndrome is a genetic condition that affects the connective tissue in the body. It was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz in 2005.
The Loeys-Dietz Syndrome Foundation provides information about Loeys-Dietz syndrome and hope to those impacted by the condition by encouraging education, fostering research, and providing support for affected individuals, parents, and families.
More information about Loeys-Dietz syndrome and our work is available at www.loeysdietz.org.
Chief Program Officer
The Marfan Foundation
SOURCE The Marfan Foundation