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WE NEED YOU!
Every day, kids and adults experience loss and disability due to Cavernous Malformation (CM), a rare disease in Canada that typically affects the brain and spinal cord. A CM is an abnormal cluster of small blood vessels resembling caverns with thin leaky walls.
CM's may cause a serious life threatening or altering hemorrhagic stroke in at 25% of symptomatic cases. Other symptoms include seizures, headaches, vision changes, neurological deficits such as weakness, mobility changes, loss of sensation, swallowing challenges, and more.
There is no cure for cavernous malformation. There is limited treatment for cavernous malformation, other than brain or spinal cord surgery.
Often, cavernous malformations are in a place that is not safe for surgery, leaving a patient with limited options.
Most patients have one cavernous malformation. Some have many and for others, more will continue to form in their brain, spinal cord and at times, other areas of the body. While patients lose abilities, activities they enjoy, careers and more in their quality of life, their families as caregivers, are also incredibly impacted in their own health and support systems.
A CM may happen at any life stage, even infancy. In about 20% of cases, it is inherited. Inherited disease is often more aggressive. In one very rare type of inherited cavernous malformation, CCM3, it may be more aggressive in childhood. It often presents with repeated brain hemorrhages, innumerable cavernous malformations throughout the brain, along with a higher likelihood of developing other benign brain tumour growth and scoliosis.
This disease may pose a risk to life and quality of life for patients.
We need your support today so those affected may live an improved quality of life. Additionally, to coordinate access to the expert care they need, as quickly as possible. Additionally, patients deserve treatment options and a cure. You can directly impact each person affected by this disease in Canada and beyond.
Your donation improves access to medical professionals that have experience in CM and treating symptoms. Your support will expand our Peer Support Network programs which includes one on one personalized navigation of patient care and coordinates access to the best specialists. Your donation will allow us to partner in comprehensive multidisciplinary projects to help an increased number of patients and their families access the most expert care available in Canada, regardless of where they live. Contributions allow us to increase public awareness, reach patients earlier and collect data in a manner that informs research and programming, increases the knowledge of CM in the clinical and scientific setting and breaks down the existing barriers to patients quickly-before their lives are irrevocably disrupted.
Your donation funds the need towards a cure and treatment for CM patients through select Canadian research that is supported by Cavernous Malformation Canada.
To truly understand the impact of this disease, read the brave stories of our patients. Let their courage in the face of loss, bring to light the many reasons why we need your help. Patient Stories | Cavernous Malformation Canada
Cavernous Malformation Canada is a registered charity in Canada that is 100% volunteer. www.cavernousmalformation.ca
Our Vision is a cure and improved quality of life for those affected by this disease. Our Mission is to support and inform those affected by cavernous malformation by connecting patients and families with meaningful resources, including each other. We advocate for our community by raising awareness, engaging stakeholders, driving research, and contributing towards the development of a robust network of medical professionals with knowledge of cavernous malformation across Canada.
Your donation changes lives in our patient and family community. The impact you make is of the highest value. Please share this to raise awareness! We are incredibly grateful for your donation and for making a meaningful difference in the lives of those with cavernous malformation and their families.
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