Genetic Aortic Disorders Association Canada

08/14/2026

GADA Canada is deeply saddened by the passing of Dr. Reed Pyeritz on August 10, 2026.

A pioneering physician, geneticist, researcher, teacher and leader, Dr. Pyeritz made transformative contributions to the understanding, diagnosis and treatment of Marfan syndrome, cardiovascular genetics and heritable thoracic aortic disease.

His impact was deeply felt within our community. Dr. Pyeritz was a longstanding friend and supporter of GADA Canada (formerly the Canadian Marfan Association), generously sharing his expertise and guidance and serving on our advisory board for decades. In 2017, GADA Canada presented him with the Tirone David Award in recognition of his exemplary service, innovation and longstanding contributions to our organization.

His legacy also remains central to the Montalcino Aortic Consortium. In 2013, Dr. Pyeritz and Dr. Dianna Milewicz chaired the inaugural meeting in Montalcino, Italy, helping establish MAC as an international collaborative research network. He served as Chair of the MAC Executive Committee from 2013–2017.

Beyond his scientific achievements, Dr. Pyeritz was known for his generosity, mentorship and commitment to patients and families. His influence can be seen in the science he advanced, the organizations and collaborations he helped build, the clinicians and researchers he mentored, and the countless lives touched by his work.

We extend our deepest condolences to his wife, Jane, his family, friends, colleagues, and the global community affected by heritable thoracic aortic disease.

As Dr. Dianna Milewicz shared, “His legacy will live on in part through MAC. We were all better for knowing Reed.”

He will be profoundly missed, and his work will continue to shape the field for generations to come.

Tributes to Dr. Pyeritz are being collected here: https://www.kudoboard.com/boards/vLiKLNi5

08/11/2026

Share your story. ❤️

GADA Canada welcomes stories from individuals and families affected by genetic aortic disorders to help inform our website, social media, and awareness campaigns.

📩 Ready to share? Submit your story here: https://forms.gle/P11JtCD1x9P3cFKM6 or email us at [email protected].

Share your story!

GADA Canada is inviting individuals and families impacted by genetic aortic disorders to share their personal experiences for use on our website, social media, and awareness campaigns.

📩 If you’re ready to share, please submit your story here: https://forms.gle/P11JtCD1x9P3cFKM6 or email us at [email protected]

Together, we can turn lived experience into life-saving action ❤️

08/06/2026

New Series: Understanding the Canadian Cardiovascular Society's Clinical Practice Update on Cardiogenetic Testing

GADA is launching a four-part series that breaks down key recommendations from the recently published Canadian Cardiovascular Society's (CCS) Clinical Practice Update on Cardiogenetic Testing. We'll explain what the recommendations mean in plain language and how they can help improve care for people living with HTAD and their families.

Throughout the series, we'll explore genetic testing, access to care, family screening, healthcare provider education, and more.

📖 Swipe through to learn about the Clinical Practice Update and follow along over the coming weeks as we explore each topic in more detail.

Read the full update here: https://onlinecjc.ca/article/S0828-282X(25)01067-0/fulltext

07/31/2026

This article covering Observations from IRAD on Sex‐Related Differences in Clinical Profile, Management, and Outcomes of Patients With Type A and B Acute Aortic Dissection was featured in a recent Aortic Science: Research Highlights, part of GADA Canada’s e‑newsletter.

In this edition, we shared about how diagnosis, treatment, in-hospital survival, and long-term survival varied between men and women with Acute Aortic Dissection (AAD).

Aortic Science: Research Highlights provide clear summaries of newly published research, along with direct links to the original articles for those who wish to explore the full studies in greater depth.

📖 Read the full article here: https://www.ahajournals.org/doi/10.1161/JAHA.124.037506

If you’d like to receive future research highlights—along with news, updates, and educational resources—you can subscribe to GADA Canada’s mailing list at the link in our bio.

07/10/2026

It is with great sadness that we share the news of the passing of Jill Valer, a friend and cherished member of the GADA community.

Jill’s generosity, encouragement, and unwavering commitment to supporting others living with genetic aortic disorders left a lasting impact on countless individuals and families. Over the years, she brought people together, offered strength during difficult moments, and reminded others that they were never alone on their journey.

Beyond GADA, Jill’s warmth, kindness, and compassion touched the lives of her family, friends, and everyone fortunate enough to know her. Her legacy is one of selfless service, genuine connection, and a life that made a meaningful difference in the lives of so many.

We are deeply grateful for all that Jill contributed and for the care and hope she shared so freely with others. Our heartfelt condolences are with Loge, Amanda, Thomas, extended family, friends, and all those whose lives were touched by her.

❤️ Jill will be deeply missed and fondly remembered.

If Jill touched your life, we invite you to share a memory or leave a tribute in her honour. Your words will help celebrate the remarkable person she was and the lasting impact she made https://tributearchive.com/obituaries/48967546/jill-valer/markham/ontario/chapel-ridge-funeral-home

06/19/2026

Advocacy looks different for everyone. There is no single “right” way to advocate—your approach will be shaped by your lived experience, comfort level, available time, and unique strengths. Whether your efforts are quiet and personal or visible and far-reaching, every form of advocacy has value and can make a difference.

In the following section, Lindsey Rusche shares perspectives on personal advocacy for people living with Genetic Aortic Disorders (GADs). Drawing on her experience as a patient advocate, she offers practical advice on navigating healthcare, advocating for your needs, and planning for the future.

Advocacy is not about having all the answers. It is about being informed, engaged, and empowered to take an active role in your care and well-being. The steps may seem small, but the actions you take today can have a meaningful impact on your future.

05/28/2026

Aortopathy Care 101 🩺

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for an Echocardiogram.

An echocardiogram, or “echo,” is an ultrasound of your heart. It uses sound waves (no radiation) to create real-time images to help your care team monitor your heart and aorta in conditions like Marfan, vEDS, LDS, and other aortopathies.

An echo is often the first and most common test used to monitor the aorta and heart over time as it is safe, accessible, and repeatable without radiation.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

05/25/2026

Aortopathy Care 101 🩺

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for an MRI scan.

An MRI (magnetic resonance imaging) uses powerful magnets + radio waves (no radiation) to create detailed images of your body to help your care team assess the head/neck, heart, and blood vessels from head to hips depending on your condition (vEDS, Marfan, LDS, and more).

MRI is a safe, detailed way to monitor your blood vessels and heart without radiation, and helps guide long-term care in aortopathy conditions.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

05/22/2026

Aortopathy Care 101 🩺

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for a CT scan.

A CT (computed tomography) scan is an advanced imaging test that uses X-rays and computers to create detailed images, giving your care team a clear, 3D look at your aorta.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

The St. Paul’s Clinic is also part of the team hosting the 2026 HAD Symposium this weekend (May 22–23), bringing together experts from across Canada and internationally to discuss new developments in genetics, diagnosis, and management of hereditary thoracic aortic disorders.

05/15/2026

A new diagnosis can feel overwhelming. Here are a few simple, supportive reminders from Registered Nurse, Kaitlin Finsterwald, from the Heritable Aortopathies Clinic at St. Paul’s Hospital, that may help you and your family navigate the early days and your ongoing care.

The St. Paul’s Heritable Aortopathies (HA) Clinic is also part of the team hosting the 2026 HAD Symposium, which brings experts together from across Canada and internationally to discuss new developments in the fields of genetics, diagnosis, and management of hereditary thoracic aortic disorders. Visit https://www.heritableaorticdisorders.com for more information.

📅 May 22 — CME Accredited Professional Day
📅 May 23 — Patient Day

📍Vancouver, B.C.

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