PlacesMississauga, OntarioGenetic Aortic Disorders Association Canada
Many concerns have been raised about the intensity of exercise recommended safe for an individual with a genetic aortic disorder. Depending on the underlying genetic diagnosis affected individuals should seek the advice of their physician or cardiologist before attempting any exercise.
Research is being carried out to understand the effects of exercise on the aorta, which will inform physicians the routine exercise recommendations for improving aortic health and the quality of life of affected individuals.
Research News: Mild aerobic exercise has beneficial effects on the aortic wall of a mouse model - Marfan syndrome associated aortic aneurysm. The research data showing beneficial effects of mild aerobic exercise on the structural integrity of the aortic wall in a mouse model of Marfan syndrome. Click the image below for more.
The Marfan Foundation, USA, recommends physical activity guidelines for Marfan syndrome or a related genetic aortic disorder.
Listen to the recording of a conference call held by The Marfan Foundation, to address common questions about exercise and activity when you have Marfan or a related disorder.
TODAY IS THE LAST DAY to show GADA your support & be part of the Great Canadian Giving Challenge!
DONATE BY JUNE 30 & HELP GADA WIN! Every dollar donated via CanadaHelps, automatically enters us into a prize draw to win a $ 10,000 donation.
GADA Canada is dedicated to helping prevent early death and to improve the quality of life for individuals living with genetic aortic disorders through research, education, awareness, and support. Your generous contributions enable us to r...each out to the affected members of our community.
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Show GADA your support & be part of the Great Canadian Giving Challenge!
DONATE BY JUNE 30 & HELP GADA WIN! Every dollar donated via CanadaHelps, automatically enters us into a prize draw to win a $ 10,000 donation.
GADA Canada is dedicated to helping prevent early death and to improve the quality of life for individuals living with genetic aortic disorders through research, education, awareness, and support. Your generous contributions enable us to reach out to the affected ...members of our community.
See MoreTake the time to read this great profile highlighting the exceptional work and commitment of Dr. Maral Ouzounian, Cardiovascular Surgeon in Toronto. We are honoured to have Dr. Ouzourian on our Professional Advisory Board.
#aorta #aorticdisorders #uhn #mothersday #marfan #loeysdietz #petermunkcardiaccenter
Learn the Genetics Behind Aneurysms - Dr. Dianna Milewicz, MD, PhD, Chair of GADAs’ Professional Advisory Board and Executive Chair of the international Montalcino Aortic Consortium (MAC), informs about how genes can predict progression of aortic aneurysms to dissections. Genes can also predict other vascular diseases the patients may be at risk for. Genetic testing and routine imaging from the head to the pelvis are important to monitor aneurysms of the aorta and other arter...ies in patients with aortic disease.
Dr. Milewicz explains that individuals with mutations in the ACTA2 gene do not show syndromic features as are seen in Marfan and Loeys-Dietz syndrome. Furthermore, ACTA2 mutations can cause enlargement of the aorta and also cause occlusion (closure) of other arteries. Research to understand underlying pathways that are responsible for complex differences in clinical manifestations of genetically triggered aortic disease is extremely crucial.
#aortic #aorticdisorders #ACTA2 #marfan #Loeys-Dietz #research #genetic #aneurysm #vascular #aorta
Dianna Milewicz, MD, PhD, Chair of GADAs’ Professional Advisory Board and Executive Chair of the international Montalcino Aortic Consortium (MAC), explains why Physician-Scientists are crucial for the future, having a significant role in developing better treatments and saving lives. The Physician-Scientist workforce has been declining, and we need to change that trend in order to prevent premature death and disability from rare disease conditions
Dr. Milewicz is the President George H.W. Bush Chair of Cardiovascular Medicine, Director of the Division of Medical Genetics and Vice-Chair of the Department of Internal Medicine at the University of Texas Health Science Centre at Houston, Texas, USA.
#aortic #aorticdisorders #ACTA2 #marfan #LoeysDietz #research #genetic #aneurysm #vascular #aorta #LDS #EDS
Today is Rare Disease Day and is focused on and advocating for more research for rare diseases. GADA is focused on research and encourage you to get involved with ongoing research projects.
RESEARCH STUDIES LOOKING FOR PARTICIPANTS
STUDY 1: Enhanced CARE for RARE Genetic Diseases in Canada
...STUDY 2: Quality of Life Survey for Individuals with Marfan
You can get involved here http://www.gadacanada.ca/participate-in-research
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Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Rare Disease Day 2017 is also an opportunity to recognise the crucial role that patients play in research.
Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.
http://www.rarediseaseday.org/page/news/2017-theme-research
#aorticdisorders #marfan #loeysdietz #eds #rarediseaseday #research
Research Studies Looking for Participants - Enhanced CARE for RARE Genetic Diseases in Canada
One in 12 Canadians is affected by a rare disease and roughly half of patients with rare genetic diseases do not get diagnosed. A new technology, called Whole Exome Sequencing (WES), can rapidly produce millions of DNA sequences all at one time and at a reasonable cost. This technology is improving the ability to diagnose individuals with suspected rare genetic diseases and could hav...e a significant impact on patients being assessed in Canadian clinics.
Researchers at the University of Calgary are conducting a survey (no longer than 20 minutes) with Canadian families to examine the impact of a diagnosis for families of children with rare genetic diseases or suspected genetic conditions. The information you provide may help health professionals determine how technology can improve diagnosing these conditions in a clinical setting. http://www.gadacanada.ca/participate-in-research
#aorticdisorders #genetic #research #marfan #eds #loeysdietz
Happy Family Day from GADA!
As many Canadians celebrate Family Day this February, we at GADA, extend our warmest wishes to you and your families. Enjoy a delightful weekend with your family!
It's also a good time to remember that if you or a loved one has recently been diagnosed with a genetic aortic disorder, please inform your family about it and ask that related members get tested immediately in order to avoid the distressing influence of an unforeseen aortic dissection in... the family. Family history and genetic testing is crucial to determine appropriate treatment and management protocols for individuals with a genetic aortic disorder.
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An interesting Canadian-based article - many connective tissue disorders have associated medical conditions like POTS (Postural Orthostatic Tachycardia Syndrome) and Orthostatic Intolerance. Awareness is essential! #AorticDisorders #POTS
Handling It Like A Champ - written by Jen Cohen-Wallace
In the middle of the night, the doctor woke me with the news that Tyler had to be rushed to The Hospital for Sick Children for cardiac surgery. I tried to get out of bed but was too weak and in too much pain. I never got to hold him or even kiss him goodbye. I called Eric and told him he needed to get to SickKids to meet the doctors immediately. Neither of us knew what to expect. Click on the link below to read this compelling story!
#Loeysdietzsyndrome #GeneticAorticdisorders with a Huge Shout out to our friends at SickKids Foundation
Hollywood actor, Alan Thicke’s death was caused by an acute aortic dissection. Everyone at GADA Canada is deeply saddened by the passing of Alan and sends our heartfelt condolences to his family and friends.
Read the full story here - https://goo.gl/sNGXOq
Genetic syndromes like Marfan, Loeys-Dietz and vascular Ehlers-Danlos syndrome can predispose an individual to aortic dissection....
The Genetic Aortic Disorders Association of Canada (GADA) is working to increase awareness of the risk factors for acute aortic dissections.
Don't let a tear in your dress ruin your holiday plans..
https://goo.gl/iQD0Ev
Help us spread hope to many Canadians afflicted with genetic aortic disorders by Gifting Today.
...Your continued contributions will get us closer to achieving our holiday goal of $15,000.
GADA Canada wishes you and your loved ones a wonderful holiday season. Thank you for your continued support. Happy Holidays!
Please take a moment to read this compelling story about a young #Bowmanville boy who underwent an emergency #aorticdissection surgery at The Hospital For Sick Children earlier this year.
Genetic Aortic Disorders Association Canada remains dedicated to supporting individuals living with #GeneticAorticDisorders such as: #Marfansyndrome #LoeysDietzsyndrome #ACTA2 #OnlyInClarington Peter Munk Cardiac Centre SickKids Foundation Newsdurham - www.durhamregion.com
