NEWS RELEASE
CAVERNOUS MALFORMATION CANADA
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EDMONTON, AB — In June, cities across Canada, will light up in shades of red, white and grey to raise awareness for Cavernous Malformation.
A rare disease affecting approximately 1 in 500 people, Cavernous Malformation has no cure. Primarily impacting the brain, these benign, abnormal vascular malformations can hemorrhage, and cause varied symptoms in approximately 50 per cent of patients, such as seizures, neurological deficits and stroke.
Already recognized internationally, June has been officially declared Cavernous Malformation Awareness Month in Alberta by the Honourable Adriana LaGrange, Minister of Health
Dr. Atif Zafar, Medical Director of the Stroke Program at St. Michael’s Hospital in Toronto and Director of the Scientific Advisory Board for Cavernous Malformation Canada comments
"I am so proud of the Ministry of Health in Alberta for officially declaring June as Cavernous Malformation (CM) Awareness Month. Raising awareness around CM is important so that people can be diagnosed and treated early. There is no cure for CM, but there are treatments that can help to manage the symptoms and prevent complications. I am confident that Cavernous Malformation Awareness Month will help to educate the public and healthcare professionals about this condition and the importance of early diagnosis and treatment. "
According to Prem Kaur, President and CEO of the charitable organization Cavernous Malformation Canada, this disease can be inherited and take place across the lifespan, including in infancy. “It’s those cases of the little ones affected, especially with inoperable lesions that really inspire me to work to bring forth awareness, the advocacy towards a cure and a better quality of life for patients.” A patient herself of the inherited form of the disease, sharing her story and meeting with patients across Canada that have had life interrupted with loss and disability really brings into focus the need to inspire research towards treatment approaches and a cure.
Some excellent strides have been made, and the time is now for more. Patients with one of the three identified genetic versions of the disease have multiple lesions and will grow more over time. Brent Derry, Ph. D Senior Scientist, Developmental & Stem Cell Biology Program Research.
Integrity Advisor, The Hospital for Sick Children Research Institute, and Director of the Scientific Advisory Board for Cavernous Malformation Canada comments
“Over 20 years of fundamental and clinical research has provided major insights into the genetics and pathobiology of Cerebral Cavernous Malformation (CCM), which has led to the initiation of several clinical trials. This was possible through generous funding from agencies like the Canadian Institutes of Health Research (CIHR), the National Institute of Health (NIH), and many other funding bodies around the world. Some of these funding programs supported international collaborations that have significantly advanced our understanding of this disease and identified candidate drugs. Although, we have a way to go I am optimistic that we will soon be able to manage this disease using non-invasive therapies.”
Patients often arrive at an ER, and state that no one has heard of it. Cavernous Malformation Canada supports patients by connecting them with specialists that have knowledge and expertise in CM. The #lightupforcavernousmalformation initiative this month is to raise awareness, honour patients, families and the entire cavernous malformation community. Cavernous Malformation Canada can be reached at www.cavernousmalformation.ca
Light up schedule:
June 12
Calgary Tower (Calgary, AB), City Hall (Lethbridge, AB)
June 13
City Hall (Kingston, ON), Springer Market Square (Kingston, ON) Byward Market (Ottawa, ON)
June 14
CN Tower (Toronto, Ont. – last 30 minutes of every hour)
"Toronto” sign (Toronto, Ont.), Shaw Centre (Ottawa, Ont.
Niagara Falls (Niagara Falls, Ont. – from 10:15 p.m. to 10:30 p.m.)
Meridian Place (Barrie, Ont. – June 14-21), Brant Street Pier (Burlington, Ont.)
Clock Tower (Mississauga, Ont.), Mississauga Celebration Square (Mississauga, Ont.)
RBC Convention Centre (Winnipeg, MB), Fairmont Hotel MacDonald (Edmonton, AB)
Science World Dome (Vancouver, BC)
Olympic Tower (Montreal, QC)
June 16
Reconciliation Bridge (Calgary, AB)
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