Connective Issues - Summer 2020

NEW PARTNERSHIP WITH LOEYS-DIETZ SYNDROME FOUNDATION In May, the Foundation announced that the Loeys-Dietz Syndrome Foundation will officially become a division of The Marfan Foundation on July 1, 2020. 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. 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 Angela Crist, the recently named division director. It will retain its logo and independent website, loeysdietz.org, and Facebook page. Staff from The Marfan Foundation will work with Crist and Loeys-Dietz Syndrome Foundation volunteers to expand opportunities in all mission areas – education, support, and research – as well as support fundraising.

With many members of our VEDS community spread apart across the globe, we are excited to begin offering a new program to help connect with others online. The new VEDS Friendly Connection program gives individuals of any age an opportunity to connect with another person who is on a similar journey with VEDS. Whether you have VEDS, or are a family member of an affected person, you can connect and participate regardless of your location. For a community that frequently experiences isolation, this is a great opportunity to connect with others one-on-one. Register for the VEDS Friendly Connection program at TheVEDSMovement.org and you will be contacted to connect you with someone else in the community.

t Bella Marin and Kristi Posival

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Summer 2020