Since 2005, my care has been coordinated with the recommended annual screening and interventions. The management guidelines, research, and publications supported by the ongoing efforts of the LDSF has continued to be a steadfast resource.
Read MoreI look back, excitedly holding my newborn baby, juxtaposed with the feeling that something isn’t right. Mothers know when things aren’t quite right. And. I. Knew. What I did not know, was that this new journey would take me on a completely different path than I ever imagined, and teach me lessons far greater than any book I would read.
Read MoreThe Marfan Foundation is pleased to name Angela Crist as the director of its new Loeys-Dietz Syndrome Foundation division. Angela will play a direct role in enhancing the programs, services, and support provided for the Loeys-Dietz syndrome community.
Read MoreThe 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.
Read MoreOur commitment to be involved with the Loeys Dietz Syndrome Foundation stems from our personal experience. Our grandson, Noah Padilla has Loeys Dietz Syndrome. He has had twelve surgeries thus far and we have been there for him every step of the way. We choose to be involved in fundraising not just for Noah, but for all individuals (and their families) suffering with this syndrome. Sometimes we think we have to do big things to make a difference. This is simply not true! Just remember that it all adds up! Every little bit.
Read MoreAfter accepting that there's always going to be complications down the road, I found that my world didn’t grow smaller like I feared it would. Instead, it expanded. How I chose to overcome these ‘bumps in the road’ have defined who I have become.
Read MoreI was born and raised in New Orleans, LA. I just made the big 40 in June and I could not be more excited! My 30s were a mix of the absolute worst and unbelievably best times of my life.
Read MoreFor us, the LDS conference is a home coming. We belong. We are family. We know that no matter what we are welcomed. This conference in June will be our third.
Read MoreThis month marks the 14th anniversary of the identification of Loeys-Dietz syndrome. It also marks the 7th anniversary of my daughter Aileen’s death from a ruptured aortic aneurysm at the age of 24.
Read MoreAs a previous Neonatal Intensive Care Nurse when Mo was born in 1995, I longed for a place to connect with others as well as find the most up-to-date information in the care of my daughter.
Read MoreI was initially trained as a pediatrician and a cardiologist. I was quite happy participating in the care of individuals. But simply became frustrated that what we were doing at the time didn’t seem to be making a difference.
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