Loeys-Dietz Syndrome Awareness Month 2023

Join our month-long campaign to raise awareness for LDS and embrace uniqueness in the LDS community.

How can you get involved?

Community

Join the community in sharing what makes you unique! Download our printout, fill out what makes you unique, and display your answer – either in your home or by taking a picture with your answer and sharing it on social media.

Awareness

Raise awareness on social media by liking and sharing our posts, or by creating your own and using the hashtag #LDSAwarenessMonth. Raise awareness in person by talking about LDS to your friends and family.

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Education

Learn about what makes LDS so unique. Find information on signs and symptoms, treatments, medications, genetics, other connective tissue disorders, and more.

Donations

Donate to help the Foundation promote research, awareness, education, and support for those affected by Loeys-Dietz syndrome (LDS) and related heritable aortic disorders.

Support

Find help and resources for patients and families. The Foundation offers a free LDS helpline at 1-888-LDS-FCAN as well as a resource directory and clinic directory.

Research

The Foundation is proud to fund cutting-edge research on Loeys-Dietz syndrome and related conditions. Meet the researchers and read about the projects that are underway.

Each LDS Story is Unique

After officially being diagnosed with Loeys-Dietz syndrome (SMAD-3 variation) in October 2021 and having to postpone my pursuit in higher education, I knew my life would be filled with various new challenges. During my diagnosis, I remember this overwhelming sense of anxiety, stress, and fear, and how I wish I had someone to talk to who could relate to my personal LDS experience. Thus, when I was introduced to the Foundation in May 2022, I pitched the idea of a new support initiative, for Canadians with LDS. Currently, I volunteer with the Foundation to ensure that LDS patients have ample resources, knowledge, and overall support in their LDS journeys – ranging from initial diagnosis to everyday struggles.

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Steve: Sitting that day in the doctor's office, and getting the information, the look on one child's face of I don't have it, to the look on the other child's face of I have it, is just etched into my brain. The suddenness, the change, the shock, the unknown of what is going to happen. Cynthia: Throughout my pregnancy and the early years with my children, I had no idea that we had any sort of illness to be dealing with. Nobody is cut out to have a chronic illness or rare, life-threatening disorder. We grow into it. The more we do these types of things [share and raise awareness] and work together, the easier the journey's going to be.

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I contacted the Foundation on multiple occasions, for myself and for my family, and witnessed firsthand the team’s passion and willingness to support the community. I had the pleasure of working with the Foundation and currently volunteer by helping curate their directory of resources relevant to Loeys-Dietz syndrome.

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