Genetic Aortic Disorders Association Canada

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

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.



🔍 S – Suspect. Know the signs.Recognizing an aortic dissection early can save someone’s life.Know the signs to watch for...
09/17/2025

🔍 S – Suspect. Know the signs.

Recognizing an aortic dissection early can save someone’s life.

Know the signs to watch for:
➡️ Severe, sharp pain in the chest, back, or abdomen
➡️ Pain in the jaw or neck that spreads to the arms or head
➡️ Sudden pain in the throat
➡️ Difficulty breathing or speaking
➡️ Dizziness or nausea
➡️ Weak or unusual blood pressure
➡️ Loss of consciousness
➡️ Weakness or numbness in limbs
➡️ Vision changes or disturbances

If something feels wrong, trust your instincts and suspect the signs.

Stay tuned as we continue to break down what it means to Think STAT!

GADA Canada is honoured and truly grateful to join forces with six leading organizations for Aortic Dissection Awareness...
09/15/2025

GADA Canada is honoured and truly grateful to join forces with six leading organizations for Aortic Dissection Awareness Week. 💙

From September 14th to 20th, we are joining:
Aortic Hope
The John Ritter Foundation for Aortic Health
Loeys-Dietz Syndrome Foundation Canada Fondation du syndrome de Loeys-Dietz
The Marfan Foundation
Rock from the Heart
Think Aorta
Think Aorta US

in a unified effort to raise awareness, offer hope, and help save lives.

While each of us brings a unique mission and voice, we are connected by a shared purpose:

📢 To spare families the pain of losing a loved one to aortic dissection
📢To help survivors thrive
📢 To ensure more people know the signs and act fast

This collaboration is a milestone for our community, and GADA is proud to be part of it.

🫀 Aortic dissection is a life-threatening condition that is often misdiagnosed or not recognized in time. But with greater awareness, early recognition, and urgent care, lives can be saved.

That’s why we are asking you to remember STAT:

S – Suspect. Know the signs.
T – Time is critical.
A – Aortic imaging saving lives.
T – Talk about it.

This week, we honour the lives lost, support those living with aortic disorders and raise our voices together to spread lifesaving awareness.

From all of us at GADA, thank you for standing with us. 💙

🫀 In honour of Aortic Dissection Awareness Week (September 14-20th), GADA invites patients, families, caregivers, and he...
09/10/2025

🫀 In honour of Aortic Dissection Awareness Week (September 14-20th), GADA invites patients, families, caregivers, and healthcare professionals to a special, free webinar on September 17th!

Led by expert panelists:
• Dr. Gnalini Sathananthan, Cardiologist
• Dr. Julie Richer, Medical Geneticist
• Gretchen MacCarrick, Genetic Counsellor
• Dr. Siddharth Prakash, Cardiologist

🔗 Register now to submit your questions: https://www.gadacanada.ca/2025-webinar-aortic-dissection-awareness

🔍 Topics include:
✅ Signs & symptoms of aortic dissection
💊 Lifestyle & medication management
🧬 Genetic testing & gene-specific care
🧠 Mental health resources & support

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