Decembre 17, 2003

Ladies and Gentlemen,

In March 2002, a neurologist informed me that I was suffering from a rapid and incurable neuro-degenerative illness, Amyotrophic Lateral Sclerosis; known in France as Charcot’s Disease, in the U.S. as Lou Gehrig’s Disease and in Canada as Sue Rodriguez’s disease.

At that time, I realized that I would rapidly lose my autonomy and consequently had to organize my affairs.

Another neurologist, a specialist in ALS, invited me to take part in a clinical study to improve my quality of life and perhaps prolong it by six months since the life expectancy is three to five years after diagnosis.

Among the most prominent effects of this illness is notably the progressive paralysis of all the voluntary muscles, which gradually prevents the ability to walk, talk, eat and finally to breathe. To help you better understand, this time last year I was playing golf…

I have thus moved to the other side of the fence, that of client of the Ministry of Health. I am being treated by exceptional professionals; exceptional not just for their expertise but for their dedication and continuous support.

Notably are Dr. Monique d’Amour, neurologist at Hôpital St-Luc, President of the Canadian Consortium into the Research of ALS; Dr. Nicole Beaudoin, Doctor of therapy at the Montreal Rehabilitation Institute; and my friend, Dr. Claude Proulx

Although there are aid services in existence, I find that since the illness is not well-known, it is not well managed.

In March of 2003, after a request for a handicap sign since I was still able to drive for several months, they temporarily suspended my license instead, refusing to listen to my neurologist and occupational therapist.  Although a program of home rehabilitation exists, they denied me on the basis that my illness evolves rapidly and my life expectancy is too short.

In Quebec, the ALS Society attempts to aid patients and research, but with receipts of less than $200,000.00 per year, this is impossible.

Every year, more people die from this illness than from Muscular Dystrophy, Multiple Sclerosis and Cystic Fibrosis combined.  You can imagine the situation…

The idea of a non-profit foundation was found to be the best way to collect additional funds and especially, to ensure that these funds are well managed.  As well as to make certain that the interest remains sufficiently strong to recreate, every year, events that are capable of generating revenues that will then be distributed between the researchers and the associations that assist those that are afflicted and their families.

This is how a sum of $500,000 will, as a start, fund the Fondation André Delambre, which is composed of a Board of Directors of businessmen and my two children, Josée and Dominic. I have to make clear that these funds will not serve anyone’s personal gain.  The Board of Directors will defer to a committee of experts who will be charged with evaluating the demands and needs of this illness.

Thanks to your generosity, those afflicted with ALS will have services and equipment even if it’s just to help them breathe…

Thanks to your generosity, researchers will be able to go to the edge of their curiosity and will one day find, I am sure, a cure.

I therefore merged a line between the business world, politics and this accursed illness.

Thank you for helping us, today and tomorrow, to achieve all of this.