Genetic Aortic Disorders Association Canada

Genetic Aortic Disorders Association Canada Embracing Marfan syndrome and all Genetic Aortic Disorders through Research, Education, & Support

11/14/2025

Please share the post and petition to help raise awareness of genetic aortic disorders! 💙

11/14/2025

On November 3, the Honourable Karina Gould shared Kerry-Anne’s story in Parliament — a call to address the critical lack of awareness surrounding genetic aortic disorders.

These conditions, including Marfan syndrome, are significantly underdiagnosed. While traditionally estimated to affect 1 in 3,000–5,000 Canadians, emerging research shows the true prevalence is likely much higher.

That’s why GADA proudly funds the Montalcino Aortic Consortium (MAC), led by Dr. Dianna Milewicz, a world-renowned expert in genetic aortic disease. Under her leadership, MAC has transformed the field by identifying more than a dozen genes linked to aortic aneurysm and dissection, paving the way for precision medicine — where care is tailored to each patient’s unique genetic profile.

Kerry-Anne launched a petition after losing her daughter Kathryn and unborn grandson, Callum James, to an undetected aortic dissection. She is advocating for more robust education and research so that early diagnosis of genetic aortic disorders becomes the norm — and lives are not lost needlessly.

This petition is live now. Please sign and share to help drive change 💙: https://www.ourcommons.ca/petitions/en/Petition/Details?Petition=e-6932&mc_cid=4ed5da992a&mc_eid=UNIQID

📣 GADA Canada is pleased to announce Dr. Marie Bountrogianni as Chairperson of our Board of Directors.Dr. Bountrogianni ...
11/05/2025

📣 GADA Canada is pleased to announce Dr. Marie Bountrogianni as Chairperson of our Board of Directors.

Dr. Bountrogianni holds a doctorate in Applied Psychology from the University of Toronto and began her career as Chief Psychologist for the Hamilton District School Board.

She went on to serve as an Ontario Cabinet Minister from 1999–2007, holding senior portfolios including Intergovernmental Affairs, Democratic Renewal, Children and Youth Services, and Citizenship and Immigration. She is widely recognized for authoring the Accessibility for Ontarians with Disabilities Act (AODA), a landmark law that established Ontario as a global leader in accessibility.

Her leadership continued as Dean of The G. Raymond Chang School at Toronto Metropolitan University and through governance roles with the Royal Ontario Museum, Northland Power Inc., and national mental health initiatives.

Today, she is a sought-after keynote speaker and advisor on education, psychology, and entrepreneurship, and mal-employment, and serves on the advisory council of Eurobank’s incubator, “the egg,” in Athens, Greece.

Join us in congratulating Dr. Bountrogianni and welcoming her into this important role! ✨

MSMDS is rare, but ignoring it is a risk we can’t take.At the Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) I...
10/17/2025

MSMDS is rare, but ignoring it is a risk we can’t take.

At the Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) International Conference, hosted by the ACTA2 Alliance, doctors from around the world discussed critical topics, touching on everything from aortic disease management in MSMDS, to ACTA2 gene variants (mutations), advancements in systemic gene therapy, and resources for family advocacy and support.

Couldn’t attend the conference? No problem! Check out the presentations on Youtube here: https://www.youtube.com/watch?v=VnOytzRIZkc&list=PL9i5mdmWtAp4VhC76CV1OJ2WJNtnNXME7

🧠 On Mental Health Awareness Day (October 10), GADA invites patients, families, caregivers, and healthcare professional...
10/10/2025

🧠 On Mental Health Awareness Day (October 10), GADA invites patients, families, caregivers, and healthcare professionals to a special, free webinar on November 5, 2025

Led by expert panelist Gretchen MacCarrick, Genetic Counsellor.

This talk explores the intersection of physical and emotional well-being, addressing how to navigate anxiety, grief, and trauma while learning to coexist with an unpredictable body. Attendees will gain practical tools for resilience, including mindfulness techniques, nervous system reset exercises, and therapeutic approaches.

🔗 Register now at https://us06web.zoom.us/webinar/register/WN_ONq1Ww85SQ2rwK58siGLHg to submit your questions!

At the 2025 Montalcino Aortic Consortium (MAC) Summit, top geneticist, Dr. Reed Pyeritz, MD, PhD emphasized the need for...
10/09/2025

At the 2025 Montalcino Aortic Consortium (MAC) Summit, top geneticist, Dr. Reed Pyeritz, MD, PhD emphasized the need for a useful terminology for Heritable Thoracic Aortic Disease (HTAD).

With aortic conditions largely overlooked in medical training, patients are still frequently misdiagnosed and fail to receive the treatment they need to survive. The Montalcino Aortic Consortium (MAC) is working to change this! By working together to establish universal terminology and global standards for patient care, MAC members like Dr. Pyeritz strive to ensure more accurate and precise treatment for people with HTAD.

The 2025 American College of Cardiology Annual Scientific Session presented some important findings regarding bicuspid a...
10/07/2025

The 2025 American College of Cardiology Annual Scientific Session presented some important findings regarding bicuspid aortic valve (BAV). The data highlights the significance of BAV in the context of heritable aortic diseases, as the prevalence of BAV is notably higher (5%) compared to the general population (1-2%).

BAV is a congenital condition where the aortic valve, which typically has three cusps (flaps), instead has two. This abnormality can lead to complications, as a BAV may accelerate valvular heart disease and increase the risk of aortic events, such as aneurysms or dissections. This makes monitoring and managing individuals with BAV especially important, particularly if they also have a heritable aortic disease.

🧬 Collaboration is at the heart of MAC’s research.MAC members Dr. Siddharth Prakash and Dr. David R. Murdock are develop...
10/02/2025

🧬 Collaboration is at the heart of MAC’s research.

MAC members Dr. Siddharth Prakash and Dr. David R. Murdock are developing the UTHealth Genomic Medicine Guidance App -- a point-of-care tool designed to support clinicians and empower patients living with Genetic Aortic Disorders (GAD). By making complex genetic information easier to understand, this app will allow patients and clinicians to create better informed and personalized treatment plans.

Watch our webinar, where Dr. Prakash and Dr. Murdock explain how their exciting new app could shape the future of patient care.

Watch here: https://www.youtube.com/watch?v=d13Q_u2A2Gg

💡Major break-through in ACTA2 research!Scientists have used a powerful gene-editing tool—CRISPR-Cas9—to fix a disease-ca...
09/30/2025

💡Major break-through in ACTA2 research!

Scientists have used a powerful gene-editing tool—CRISPR-Cas9—to fix a disease-causing ACTA2 R179H genetic variant in mice with features of Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS), a rare condition that affects blood vessels and can lead to strokes and serious complications.

🐁 The study, done in mice that carry the same mutation or variant, showed powerful results:

✅ Healthier brain and blood vessels

✅ Protection against stroke-like damage

✅ Longer, healthier lives

👉 Why this matters:

This is the first time scientists have shown it's possible to target the root cause of MSMDS in a living system. It opens the door to potential future treatments—not just for MSMDS, but also for related vascular diseases.

Read the full article here: https://www.nature.com/articles/s41551-025-01499-1.epdf?sharing_token=iumHXfVlf4zRbJs-IUBPnNRgN0jAjWel9jnR3ZoTv0OMkCeoPrK5TZ1H0-3wgG_jaRCeqTG8PyT-tzzljrN7bRj5EXQMzwgeM9dNgoDT9_87Tu-YqjZjzqksGxXGIciaYh_ubfk5SM01wRoz2317fYIhElq3isZRsy4zFR26Des%3D

🗣 T – Talk About ItAortic dissection often runs in families due to underlying genetic aortic disorders like Marfan syndr...
09/19/2025

🗣 T – Talk About It

Aortic dissection often runs in families due to underlying genetic aortic disorders like Marfan syndrome, but many people don’t know they’re at risk.

Talking about it saves lives.

If you have a diagnosis or family history, speak with your doctor about genetic testing and regular monitoring. And if you’re a survivor, know that support and community are here for you.

🏥 A – Aortic Imaging Saves Lives.When an aortic dissection is suspected, quick access to aortic imaging like a CT scan i...
09/18/2025

🏥 A – Aortic Imaging Saves Lives.

When an aortic dissection is suspected, quick access to aortic imaging like a CT scan is essential. Rapid imaging helps confirm the diagnosis, enabling immediate surgical intervention to save lives.

⌚ T – Time is CriticalAortic dissection can become fatal within hours. Every minute counts. Early recognition and immedi...
09/18/2025

⌚ T – Time is Critical

Aortic dissection can become fatal within hours. Every minute counts. Early recognition and immediate action can be the difference between life and death.

Don’t wait. Act fast. Save lives.



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