MESSAGE FROM THE EXECUTIVE DIRECTOR
It gives me great pleasure to welcome you to the new Thalidomide Victims Association of Canada (TVAC) website. Whether you are looking for information on the history of the thalidomide tragedy, on how to recognize the congenital malformations caused by the drug, on the use even now of thalidomide and the careful monitoring its use requires, whether you are seeking information on our organization’s programs and services or if you just want to send us a word of support, you have come to the right place!
Over the last 20 years, our organization’s determination to carry TVAC forward in its mission of mutual assistance for Canadian thalidomiders and raising public awareness of the dangers associated with the use of teratogenic drugs has never faltered. Here are just a few of our accomplishments in this task:
1988-2008 - already 20 years old !
Thanks to our many partners and the public’s generosity, TVAC has made its mark in the following areas:
- With the support of the War Amps of Canada, we organized the first meeting of Canadian thalidomide victims, which took place in Ottawa in August 1988 and planned our first national campaign to obtain financial support from de Canadian government. This meeting was also the first step in the process of developing our organization nationwide. TVAC has held more than 7 national conferences since then;
- On June 1, 1995 we launched our “accommodation program”, tailored to the needs of Canadian thalidomide victims. The program’s purpose is to ensure that each and every Canadian thalidomide victim can maintain his or her independent life style with dignity and be a full-fledged citizen in his or her community;
- We made a name for ourselves taking a position and making recommendations on the exceptional distribution system and absolute watchfulness required in the United States’ 1998 re-marketing of thalidomide;
- In 1999, TVAC published the results of a study, conducted among its membership, entitled "Thalidomide survivors; a questionnaire survey on musculoskeletal abnormalities, general health, and quality of life".
- In 2004, in the course of an international meeting of thalidomider organizations around the world, we shared our experience and knowledge through our presentation on the status of thalidomide use in North America during the 30th anniversary of the Ishizue Foundation, an organization representing thalidomide victims in Japan;
- Another consciousness-raising coup was achieved with our presentation “45 years later…Where do we Stand!” that we gave during the MOTHERISK conference, “Establishing a new Benchmark for Drug Evaluation during Pregnancy”, that was held on May 10, 2006 in Toronto. The objective of the presentation was to highlight the importance for us all as a society to take responsibility for the quality of treatment pregnant women should be receiving, an issue which is indissociably linked to the protection of unborn children. This presentation was subsequently published in the Canadian Journal of Clinical Pharmacology;
- On July 17, 2008 we made a presentation to the U.S. Food and Drug Administration on our position concerning the risks associated with the potential marketing of a generic thalidomide drug;
- We take a great deal of pride in being the only national resource for support, assistance, understanding and empathy for every thalidomide victim in Canada as well as their relatives;
- We also have a documentation centre dedicated exclusively to the thalidomide tragedy and we provide a unique public education and awareness service concerning the teratogenic side-effects of thalidomide.
I am fortunate to be able to rely on a solid and energetic team of assistants and on the dedicated involvement of the TVAC board members, all of them Canadian thalidomiders. My thanks go out to our priceless partners and generous donors whose support made possible our 20th anniversary“20 years… You are the heart of it all!” celebration which brought Canadian thalidomiders together under the banner, . Held on 7, 8 and 9 November 2008, it was a unique event for our organization. I also want to extend a sincere thanks to our wonderful volunteers and sponsors for the trust you place in us that forever inspires us to keep moving forward.
In 2009, 10 years after the first study, TVAC is undertaking a second study among its members "Reality 2009: Study on the Current Living Conditions of Canadian Thalidomide Survivors and their Projections for their Future." The goal, for TVAC, is to better understand the health status, the needs and the living conditions of its members, so we can best represent them.
The Thalidomide Victims Association of Canada occupies a singular and well-deserved place in our society. It is definitely here to stay as long as we can maintain the determination to go on and work for the benefit of our unique community and to remind the world at large of the vulnerability of the human condition and the resultant need to protect unborn children. I would even say that, bit by bit, we will go on setting our stamp on history..., in a way only the survivors of thalidomide could manage to do.
Mercédes Benegbi
Executive Director
P.S. I would invite you to fill out our survey which will only take a brief moment of your time and will be extremely useful for us.
