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Message from the Executive Director

MESSAGE FROM THE EXECUTIVE DIRECTOR


It gives me great pleasure to welcome you to the 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!   

Our report (see link) on the current living conditions of the Canadian thalidomide survivors and their projections for their future allowed us to convey, in 2013, a real cry for help from the Canadian thalidomiders. Because our community, as a whole, is severely affected by problems of premature physical degeneration and by the resulting loss of autonomy, we have no choice but to bring forward and prioritize interventions and demands addressed specifically to the bodies responsible for this historic Canadian tragedy, as well as their duty to ensure a safe and decent future for the survivors. Prior to the release of this report, our event commemorating 50 years of the thalidomide tragedy, which took place in Ottawa in  2012, provided an opportunity for all of our members and partners to discuss issues and to socialize. A consensus came out of this experience, which is that Canadian thalidomide survivors have an undeniable feeling of belonging that is stronger than ever, within TVAC.  

 

Accordingly, it is with a clear mandate and with great determination that TVAC will put everything in place, in 2014, in order for the bodies responsible for this tragedy to propose and implement solutions to meet adequately the serious needs and major difficulties faced by our members.  


LET'S LOOK BACK OVER SOME OF WHAT TVAC HAS ACHIEVED SINCE IT WAS CREATED: 

Since 1988, our organization's determination to carry TVAC forward in its mission of mutual assistance for Canadian thalidomide survivors 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:

  • 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. Thanks to your donations, our "accommodation program" is still in operation today and makes a huge difference in the quality of life of our members;
  • 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;
  • Held on 7, 8 and 9 November 2008, our unique event "20 years... You are the heart of it all!" brought Canadian Thalidomiders together as we celebrated the 20th anniversary of TVAC;
  • 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 to the various government, public and private authorities concerned;
  • In solidarity with the Brazilian thalidomide survivors, TVAC participated to the International meeting, held from October 25th to 31st, 2009, in São Paulo. We were confronted to the harsh reality of a third generation of children, victim of thalidomide, in Brazil. As Canadian representatives, we shared historical facts concerning the thalidomide tragedy in Canada, but also our experience in regards to the controlled distribution of thalidomide in North America. The blessing of being able to share our common experiences and the warm welcome the international community received from our Brazilian colleagues gave to the event, an incredible feeling of brotherhood;
  • In the context of the re-marketing of thalidomide in Canada, August 4, 2010, and to protect the unborn children, we revised the RevAid program and proposed many recommendations, which were all favourably welcomed;
  • On March 2nd, 1962, the Canadian government withdrew Kevadon and Talimol (two different trade names for thalidomide) that had been prescribed to pregnant women without the slightest restriction. Therefore, the year 2012 has represented for all of us, both survivors and family members, 50 years of carrying on despite the manifold challenges inflicted on all of us. On October 19, 20 and 21, in Ottawa, TVAC members, parents, friends and partners have joined us at our National Event entitled : ″ THALIDOMIDE : 1 pill… 50 years later! ″.  Formal presentations, discussions, workshops and entertainment has led on to make this great gathering another unforgettable moment in the life of our association;
  • 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 the organization of our national events, conferences, programs, services and all our activities. 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.

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.

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