Today, Epilepsy Canada announced an agreement with Idic15 Canada, to cooperate on awareness initiatives to promote the connection between epilepsy and the Idic15, otherwise known as Chromosome 15q11-13 Duplication Syndrome. Idic15 Canada is a recently established Canadian Non-Profit Society, which provides collaboration, advocacy and research to families living with the condition.Gary Collins, Executive Director of Epilepsy Canada says, “Initially our involvement will be to assist in creating awareness for Idic15 Awareness Day and providing online fundraising resources to the Idic15 organization.”
Idic15 is a rare chromosomal disorder involving an extra copy of genetic material from the long arm of chromosome 15 in the region 11.1-13.2. The type and severity of symptoms are determined by the amount and location of the duplicated genetic material. Many, affected children and adults have seizures at some point in their lives. These may be occasional or frequent, short or prolonged. There is increasing evidence that SUDEP is a risk in Idic15, so management of the epilepsy is crucial.
There are currently 40 Idic15 families registered with Idic15 Canada. Co-founder Theresa McKirdy believes that there are many more that have not been properly diagnosed because of the lack of information that has been available to the medical community. The organization has been formed to advance awareness, resources and clinical research for those living with the condition. Ms McKirdy said, “Partnering with Epilepsy Canada is an important element of our strategy to raise overall awareness about the Idic15 disorder.”
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