Our Mission
The National Loeys-Dietz Society was founded in 2007 by a group of families whose children were recently diagnosed with Loeys-Dietz syndrome. In 2008 The Loeys-Dietz Syndrome Foundation (LDSF) became a registered 501c(3) organization dedicated to:
encouraging education about Loeys-Dietz syndrome and related connective tissue disorders to medical professionals and lay communities in order to aid in identification, diagnosis, and treatment of Loeys-Dietz syndrome
fostering research about Loeys-Dietz syndrome
providing a support network for individuals, parents, and families affected by Loeys-Dietz syndrome
The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our mission. You will receive a donation receipt from The Marfan Foundation.
Our Purpose
Our purpose is to provide information about what Loeys-Dietz syndrome (LDS) is and to provide hope for those impacted by the condition. We hope that through our website, newsletter, social media outlets and other resources, you will find medical information and personal support to assist you and your family on your journey with LDS.
We strive to serve a growing global community of individuals impacted by LDS.
Director of the Loeys-Dietz Syndrome Foundation
Stacey Watson
Director
Email Stacey
Stacey works to enhance the programs, services, and support provided for the community as the Director of the Loeys-Dietz Syndrome Foundation. Diagnosed with LDS in 2013, her role as Director is deeply personal.
Stacey joined the Foundation in 2023, having spent more than a decade in non-profit management, including experience as an Assistant Camp Director and in program development, support groups, strategic planning, and development.
Stacey is a proud alumna of Syracuse University, and earned her MSW, specializing in Management and Community Organizing with a concentration in Families and Children, from the University of Maryland. She loves to cook, doodle, and travel. Stacey lives in Kensington, MD with her husband, Andrew, their two children, and beloved dog.
The Loeys-Dietz Syndrome Foundation is a division of the Marfan Foundation.
Meet the rest of the Marfan Foundation team here!
Our Steering Committee
Linda Tigges
Chair
Linda lives in Raleigh, North Carolina with her husband David and two children. Her daughter Kayley has LDS. She attended University of North Carolina for undergraduate and law school. Linda works as the General Counsel, Data Center Group for Lenovo. Linda joined the board in 2018.
Heide Padilla
Vice Chair
Heide Padilla lives in Chicago, Illinois with her husband, Germaine, and her four boys. As a result of a spontaneous mutation, her son Noah has LDS. Heide is a primary teacher and has worked in the Chicago Public School system for the past 16 years. She holds a bachelor's degree in Early Childhood Education and a master’s degree in Curriculum and Instruction. Heide has been an active fundraiser for the LDSF and joined the board in 2017.
Julie Wilson
Secretary
Julie lives in West Virginia with her husband Chris and their son Connor, who has LDS. She co-chaired the 2018 conference, a 2016 conference committee member and joined the board in 2016.
Peter Donato
Peter was diagnosed with LDS in 5th grade and the following summer he and his family went to their first Marfan Foundation conference in Philadelphia. Since then Peter has been very involved. Currently he is the Teen Program Leader and Teen Council Co-Chair. When he isn’t volunteering you find him in his hometown of Boston, MA, hanging out with friends and family.
Gretchen (Oswald) MacCarrick
Past President and Co-Founder
Gretchen lives in Towson, Maryland with her husband, Jacob. She is a genetic counselor at the Johns Hopkins University in Baltimore, Maryland working primarily with individuals diagnosed with LDS and other connective tissue disorders. She holds an undergraduate degree in biology. She is a co-founder of the LDSF, past president, and has served on the Board since 2007.
Mary Meyers
Mary lives in Minnesota with her husband and two children. Her daughter, Adalynn, has LDS. Mary grew up knowing she wanted to help others. After 7 years working in geriatrics and memory care, and motivated by the impact of risings costs in patient care, Mary shifted to a career in the financial industry where she has now been for 10 years. Her skills in both industries have helped her become a strong advocate for her daughter and everyone in the LDS community. Mary joined the Steering Committee in 2024.
CARLOS MORALEs
Carlos Morales, 42, from St. Louis, has been married to his wife Stephanie for over 20 years. They have two daughters, Kylie, 17, and Kaitlyn Rose, who passed away in September 2023 at age 14 due to an aortic dissection.
Following Kaitlyn’s passing, Carlos was diagnosed with Loeys-Dietz Syndrome (LDS) Type 2, a condition that likely contributed to her passing. In response, Carlos and his family have become advocates for LDS awareness, creating educational materials and serving as representatives for the Walk for Victory in St. Louis. They continue to honor Kaitlyn’s memory by raising awareness and supporting others affected by LDS.
Bridget Porter-Metz
Bridget joined the LDS Community after the tragic loss of her 13 year old son, Connor. But this mom is a FORCE, especially when it comes to education about Loeys-Dietz syndrome and aortic disease. She is a community leader in Northern California and continues to break fundraising records with the Northern California Walk for Victory.
JORDAN RAMSEY
Jordan is an Industrial Engineer in healthcare living in Ann Arbor, MI working on patient safety, process improvement, and innovation. Jordan’s sister and only sibling, Erin, was diagnosed with Loeys-Dietz Syndrome and passed away in 2008 when she was 16 years old and Jordan was 14 at the time. Since then, Jordan has been involved with the LDSF by volunteering at biannual conferences, raising awareness through her writing and helping with fundraising events, and volunteering in the community through baking cakes for kids with life-threatening illnesses and volunteering as a camp counselor at a camp for grieving children.
Dawn G. Reiner
Past President
Dawn lives in Park City, UT with her husband, Andrew, and two children. Their daughter, River, has LDS. Dawn currently serves on The Marfan Foundation Board, chairs the Marfan Foundation Mental Health Taskforce and is currently the Vice President of Marketing for her family owned product development company. She holds an undergraduate degree in marketing and graduate degree in education. She joined the LDS Board in 2014, chaired the 2016 conference and co-chaired the 2018 conference.