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20 April 2011

Opsoclonus myoclonus syndrome


(Photo Michel Chartrand) The small Laurie-Ann Duchaine is the spokesman for the new foundation that bears his name, and works to demystify opsoclonus myoclonus syndrome.

Nord Info et Voix des Mille-Iles

The dream of a single mother and the message of hope of a little girl were found in the open. On April 5 took place the launch of the Foundation Laurie-Ann Duchaine, the name of a little girl with opsoclonus myoclonus syndrome, a rare disease that affects one in ten million.

"As founder and president of the Foundation Laurie-Ann Duchaine, I am pleased to thank you for your support. Being myself the mother of a child with this disease, I can understand the tear experienced by victims, family and friends deal with this very rare disease and is still misunderstood, "to thank the founder, Marie- Eve Lanthier, voice filled with emotion and softness.

Single mother, Marie-Eve quickly discovered that his daughter had a weakness in the body, around the age of two years. The first symptoms were manifested by difficulties in maintaining the body, and irregular movements of the eyes. Soon, the mother turned to the services of the Hôpital Saint-Justine, where she obtained after several tests, diagnosis.

"I decided to create this foundation in order to move from darkness to light and loud and clear that we too exist. We too would like to be helped and supported. My greatest wish is that all these people with opsoclonus myoclonus syndrome may be pleased to know that they are not alone in the world and there is at least one person to support them. We hope that this case will affect you, "she said.

Extremely rare syndrome, myoclonic-OPSO is a neurological, immunological mechanism is likely that its cause is still incompletely understood. It affects both the adult and the child usually has a major impact on psychomotor functions. The two main causes are viral infections and tumors outside the central nervous system.

The role of spokesperson for the Foundation comes to the small Laurie-Ann, now aged nine. Although this disease is rare and there are very few cases in Quebec and Canada (roughly three in Quebec), the organizers seek to mediate the disease in order to demystify and make it known. "In order to consolidate other families with the same neurological problem that the idea came to create this foundation," said the mother.

To raise funds to support the work of the Foundation, the President launched a first activity in the form of dinner theater on Tuesday, May 10, 18 am to 22 pm at Bleu Blanc Rouge, in Rosemere. The goal is $ 20 000. During the evening, participants will have the opportunity to attend an auction led by Yvon Lambert, a former player for the Montreal Canadiens, and more music groups from the Laurentians. Tickets are available at a cost of $ 100. You can get them via the website of the Foundation, at [www.fondationlaurieann.com], or by phone at 514-567-6534.