First-ever joint virtual event to share personal perspectives
Montreal, Quebec | Port Washington, NY, February 20, 2026
Four speakers. Four journeys. Two countries. One shared community.
Loeys-Dietz syndrome (LDS) is a rare genetic condition, estimated to affect approximately 1 in 100,000 people. For people living with the condition – which impacts individuals across age, gender, and ethnicity – the toll on physical health and emotional well-being coupled with LDS’s rarity can be isolating.
“Finding community and being able to talk about life with Loeys-Dietz syndrome is essential to knowing you are not alone,” said Loeys-Dietz Syndrome (U.S.) Director Stacey Watson, who herself lives with LDS. “We’re thrilled to team up with our Canadian friends to share four personal perspectives during a first-of-its kind webinar.” LDSF (U.S.) is a division of the Marfan Foundation, where Watson serves as a program lead.
The free event, which will be held online via webinar on March 19, 2026 from 7 – 8:30 p.m. EST, requires advance registration. A panel discussion and Q&A will be held.
“We are proud to serve the Loeys-Dietz syndrome and related disorders community in Canada. We are excited to join together with the U.S. Loeys-Dietz syndrome Foundation so that we can amplify the voices of our community members from both nations in front of an audience that can take part from anywhere,” said Jida El Hajjar, Executive Director of Loeys-Dietz Foundation Canada (LDSF Canada).”LDS may be rare, but by standing together, we are breaking the isolation with connection.”
“It’s important to remember that people living with LDS are about more than their diagnosis,” said Watson. “The webinar is a chance to hear about not only the condition, but how individuals thrive alongside Loeys-Dietz.”
Canadian-based panelists include Albert Mallia, an ER physician diagnosed with Loeys-Dietz Syndrome in 2021 after years of a suspected connective tissue disorder, who brings both lived experience and frontline medical insight to his advocacy work, and Cynthia Hamilton Urquhart, a retired Royal Canadian Mounted Police officer, author, and speaker living with Loeys-Dietz syndrome whose diagnosis – alongside her youngest son’s – reshaped her life and career, and who now supports others in the LDS community by sharing her story.
U.S.-based panelists include Jaime Nurrenburn who was diagnosed with the condition in 2022 and is a practicing physical therapist and sports medicine provider and Megan Neisius – a proud parent and passionate advocate who found purpose when her son, Eli, was born unexpectedly premature and later diagnosed with Loeys-Dietz Syndrome.
LDS can affect many parts of the body. The condition can be inherited or occur spontaneously with no family history. Not everyone has the same symptoms, and severity can vary widely—even within the same family.
Common features may include:
- Aortic aneurysm (enlargement of the aorta), which can increase the risk of fatal aortic dissection (a tear in the aortic wall)
- Arterial tortuosity (twisting blood vessels)
- Widely spaced eyes (hypertelorism)
- Cleft palate or bifid uvula (split or broad uvula)
- Skeletal features such as scoliosis, long fingers, joint laxity, or chest wall differences
- Skin that may bruise easily or appear translucent
- Allergic or inflammatory conditions in some individuals
Because vascular complications can occur at smaller aortic sizes and sometimes at younger ages than in other connective tissue conditions, regular imaging and close medical follow-up are critical.
Beyond the physical manifestations of LDS, living well with a rare condition can become easier when individuals find a supportive community that understands the journey and can relate.
“Our hope is that our show of solidarity across borders through this webinar will only be the beginning for participants. Every LDS story matters. When we come together as a global community of advocates, our shared voice becomes stronger, more purposeful, and impossible to ignore,” said El Hajjar.
Related Links
- Loeys-Dietz Syndrome Foundation Canada – https://loeysdietzcanada.org/
- Loeys-Dietz Syndrome Foundation – www.loeysdietz.org
- The Marfan Foundation – www.marfan.org/aorticawareness | www.marfan.org
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.