WE NEED YOU!
Kids, teens and adults are facing disability due to Cavernous Malformation (CM), a rare disease in Canada that mostly affects the brain and spinal cord. A CM is an abnormal cluster of small blood vessels resembling caverns with thin leaky walls.
A serious consequence is a symptomatic hemorrhagic stroke. Patients may also have symptoms such as seizures, headaches, vision changes, neurological deficits and more.
There is no cure for cavernous malformation. There is no treatment for cavernous malformations, other than surgery.
Most patients have one cavernous malformation. Some have many and for others, more will continue to grow in their brain or spinal cord.
A CM may happen at any life stage, even infancy. In about 20% of cases, it is genetic. Genetic disease is often more aggressive. In one genetic variant, it may be highly aggressive in childhood, with repeated brain hemorrhages, a high number of cavernous malformations and benign brain tumour growth.
This poses a risk to life and quality of life for patients.
Cavernous Malformation Canada is a registered charity that is 100% volunteer. www.cavernousmalformation.ca
Our Vision is a cure and improved quality of life for those affected.
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.
We need your support today so that kids and others who are diagnosed with cavernous malformation will no longer have a brain that bleeds. They deserve treatment options and ultimately a cure.
They need access to medical professionals that know about this disease and how to treat their symptoms and your support means we can make this happen. We are developing our Peer Support Network to support patients and families with important programs. Your contribution will allow us to develop a patient registry to drive research and have reliable information to know our patient and family needs so they received the best care and support.
Your support means a lot to our patient and family community. With your help we can accomplish these goals and the impact will be substantial towards timely diagnosis, establishing knowledge for best patient care and to support our patients while they live with this disease. Please share this to raise awareness and we thank you for your donation and for making a difference in the lives of others.
