June 10, 2011 – CanVasc – Toronto, Ontario – When I was approached to speak to you, it was with a couple trains of thought that I pondered my acceptance. One – how can I possibly enlighten this learned assembly about vasculitis? Two – the opportunity to speak about a subject so dear to my heart could not be ignored.
Vasculitis – a large umbrella looming over our heads has issued an ultimatum – do or die. We have all, in our individual ways, stepped up to the plate and countered this threat with determination, strength of purpose and a focus on winning, not just
the daily battles, but the war of survival and the conquering of our adversary.
The history of this struggle in Canada started with a few patients in Ontario that were diagnosed with Wegener’s Granulomatosis. The WG group in Kansas City started in Marilyn Sampson’s kitchen but we began in a Canadian institution, Tim Horton’s. Little did I know that my desire to know what was happening to me in 1997 would lead me into an international voyage. As part of our learning curve, we asked a number of patients to put their story on paper so that others could learn and understand my favourite saying – “You are not alone in this boat”. Everyone presented differently so it is no wonder that there was, and still is, a huge problem as you try to figure us out.
Since July 1998 when our charter was established, we have evolved in many directions.
– A board of directors has been at the helm including my husband, Bob, and I, two of the original members.
– A schedule was established with spring and fall meetings where speakers, with specific knowledge pertaining to our illness, gave us the tools needed to fight our daily battles. A third meeting has been a summer picnic for family and friends to join us for a day of fun.
– A dual membership was established with the international group in Kansas City, Missouri. We did not need to reinvent the wheel, so to speak, as they had structure in place that would serve everyone. They have an excellent newsletter that is issued every two months. Their list of consultants is awesome and it has been my honour to associate with them.
– As Canadian laws needed to be adhered to, we had to implement a specific division in Canada for donations, gifts etc. in order to issue usable tax receipts. This meant creating a registered Canadian charity.
– Our brochure has had a number of revisions and, again, to follow Canadian law, we have printed French versions. A French translator from the University of Waterloo along with Dr. Carette’s expertise, accomplished this for us.
– A learning exercise on the computer, especially for myself, is ongoing in order to reach patients, family and friends. As the internet contact, I have had queries from around the world.
– A change of name from Wegener’s Granulomatosis Support Group of Canada to Vasculitis Foundation Canada was agreed to by Ottawa under their charitable regulations. We were able to keep our original charitable number. The 15 diseases under the Vasculitis umbrella can all benefit from the efforts being put forth to find answers.
– April 2001 saw research start on a Canadian level into the DNA of patients and immediate family members, namely, parents and siblings, headed by Dr. Katherine Siminovitch at Mt. Sinai Hospital, Toronto. Our support of her efforts is ongoing.
– The development of a website, along with our brochure, has an impressive list of doctors willing to be consultants in the treatment of Vasculitis. We are constantly having updates entered in order to keep abreast of what has happened, including our March 26, 2011 presentation of a cheque for $50,000.00 to further Vasculitis research. Numerous events across the country have made this possible including the yearly picnic which has become a walk/picnic fundraiser. This event is to take place on June 25, 2011. Please check out our website – www.vasculitis.ca – Everyone is welcome.
– Working hand in hand with other organizations such as CORD and AARC is essential. With CORD, we have helped with their concentrated efforts on Parliament Hill in Ottawa. Appointments with senators and members give us a chance to put a face and a voice with our message. We need changes in our laws to enable the progressive treatment and care of rare diseases needing rare drugs.
– By using the opportunities to attend symposiums, functions, exhibitions etc. in order to promote our causes, we grow in knowledge giving us the necessary weapons needed to fight our battles. We also get to meet key people involved, namely, the front runners – the medical personnel who are involved with vasculitis in a variety of ways. In many situations, we also meet patients from all walks of life. They give us the drive to keep going, again showing us that we are not alone.
– As a part of your program, we have the opportunity to interact with the people who can, in all sincerity, be our saving grace.
It is impossible to separate the importance of patients, doctors, treatment regimes and research. The need of each is essentially intertwined. Over the last 14 years, I have had the pleasure of meeting many well-versed people on both sides of the fence – yours being clinical and ours being personal. No matter who or where, there is a main theme threaded through both – co-operation.
When I was first diagnosed, the projected figure of 5 years, or sooner, was my probable time of demise. Since then, I have met, talked with and communicated with patients that have 30 plus years behind them and still fighting. Our energizing bunny is still running because you care.
We have developed a “family” with all the wonderful people involved with Vasculitis over the years. The unfortunate loss of members of this “family” has made us more determined to get answers. Now is the time to face the needs of the future. Co-operation, sharing of knowledge and “spreading the word” are key components of the work to be done. We, the patients, can do many things at the grass roots level but we are only one part of the equation. We need you to fill in the blanks. Why are we sick? What are the best treatments to maintain a reasonable existence? Our four C’s are still a great template for what we need – Cause, Control, Care and Cure. We are throwing the gauntlet out to whoever will listen and act on our behalf. The ominous fact is that our future is in your hands. We ask you, in good faith, to work in whatever capacity you are in, to give us, as well as future patients, the opportunity to have a life of hope.
To express our appreciation to all of you is a small pittance compared to what you, as our caring medical team, accomplish for us. On behalf of all the people involved with Vasculitis Foundation Canada, please accept our gratitude for all that you have done and are planning to do for us.
Many thanks for this opportunity.
Vasculitis Foundation Canada