Important News from LDSF: We’re joining The Marfan Foundation!

Dear LDSF Friends and Family,

We have some wonderful news to share with you about the future of the Loeys-Dietz Syndrome Foundation and want to start by remembering how we got here.  As you may or may not know, the Loeys-Dietz Syndrome Foundation was founded in 2007 by a group of wonderful dedicated families whose children were recently diagnosed with LDS along with Gretchen MacCarrick, genetic counselor at Johns Hopkins. Their goal in forming the LDSF was to get information out to the world about Loeys-Dietz syndrome and to build a community, all while trying to improve the health and quality of life through research.

Thirteen years in, the operations within the Loeys-Dietz Syndrome Foundation continue to be run by a 100% volunteer Board of Directors, selfless men and women from across the United States who have given tirelessly of their time and energy to create newsletters, put on fundraisers, create websites, and of course run an excellent biennial conference.

As our growth began to overwhelm the operating board, in 2018 we moved to a fiscal sponsorship relationship with Strong City Baltimore to help us manage the administrative aspect of the business. All the while, our mission and vision has not strayed from the course. In fact, we have had great growth over the last couple of years thanks to our community, donors, volunteers and cheerleaders who have made all of this happen. This includes raising the funds for our first $200,000 cardiovascular research grant! We are in a healthy place financially and our LDSF identity is strong.

Because of our strong position, the Loeys-Dietz Syndrome Foundation made the decision at our last board retreat, that in order to have long term sustainability we are in need of staff and infrastructure. The 100% volunteer operational board model was proving to be a challenge as we and our community continued to grow. 

Fortuitously, around the same time, The Marfan Foundation reached out to us to let us know they had expanded their commitment to related genetic aortic conditions, including Loeys-Dietz syndrome, which has already had a rich history of involvement with the Foundation.

After months and months of intensive conversations, the LDSF board has decided to become a division of The Marfan Foundation. As a division, we will have our own advisory board and LDSF Director and keep our own branding, including an independent website, social media, awareness month and marketing materials.

Additionally, we will continue to focus our dollars on LDS research and have designated LDS fundraising efforts. What we will gain is support from a well-established, passionate organization with a shared mission to help us propel forward by sharing resources.

We are so excited for this July 1st transition and all the wonderful possibilities and opportunities that will come with being a division of The Marfan Foundation. 

We so appreciate each and every one of you. We thank you for your support, your patience and your trust. We are excited about all the opportunities this move will provide in better serving you and our LDSF community.