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New Canadian Leadership
The VHL Family Alliance is just that - We’re a family. People helping people, people reaching out and giving a hand where strangers will not. The new board members reflect this family affair. By way of introduction let me describe to you how we all came to be involved. The four of us come from distinct walks of life, different socioeconomic backgrounds and different careers but are galvanized by the spirit and family of our incoming Co-director, my sister, Susan Lamb.
Sue has three wonderful children, two of whom are afflicted with VHL. Brent, 25, Devon, 23 and Kellaway, 21 are her life, along with a very supportive husband and two stepchildren. She retired last year due to health problems of her own, after working for 34 years in the financial industry. She is a tenacious, no-holds-barred, find-the-truth type of individual when it concerns finding facts about VHL. Her friends call her Susie WaWa, in reference to her ability to ask the right questions and get answers like Barbara Walters, who was satirized on TV’s Saturday Night Live as "Baba WaWa". Susan is the most down-to-earth person one could imagine and her greatest asset is that she truly cares.
Our first introduction to VHL was in 1973 when my late brother-in-law, Bill, was diagnosed with von Hippel Syndrome after tumours burst in his eye. Unfortunately, laser surgery had not been perfected at that time and he lost sight in that eye. It wasn’t until Sue was pregnant with her first child, Brent, that doctors informed us about the Lindau part of the disease and were told any of Bill’s children had a 50% chance of inheriting VHL. The ophthalmologist that Bill was seeing explained that Bill could develop benign brain tumours and so he had annual brain scans. Each scan petrified my sister, not knowing what the outcome would be, but she was strong and reassuring to her three young children. In 1991, after many appointments with various specialists, Bill was diagnosed with metastasis in the spine caused by renal cell carcinoma and passed away at the age of 43 in December of 1991.
At this time, knowledge pertaining to the disease was limited, but Sue researched what she could to try to understand this life altering disease. She has a good friend that went to her local University library to find out what she could on VHL. I too canvassed the halls of The John P. Robarts Research Institute, where I work as an administrative assistant, to find answers. Needless to say, we were shocked at what we read from various medical publications concerning all of the parts of the body that VHL could affect. Sue then set out to find doctors in the Southern Ontario region who would ensure that her children, my nieces and nephew, were being given the correct screenings. We were appalled at the number of physicians who hadn’t heard of VHL.
Five years ago, one of Sue’s daughters was found to have an eye angioma, and through a literature and Internet search we thankfully found the VHL Family Alliance website, and made our first phone call. Sue and I spoke separately with Eva Logan, (a hot line volunteer). She was truly wonderful and had all the current information and latest literature sent to us. I personally saw how Sue’s frustrations and fears were lessened from just one person lending an informed ear. What a great resource the VHL Family Alliance is! It was then that I decided that the best way to help my sister and her kids was to become more involved.
I have resided in Southern Ontario for the past 30+ years. I have worked for the past 12 years at The John P. Robarts Research Institute in London, Ontario, the only privately funded, non-profit, medical research institute in Canada. Working so closely with such dedicated scientists has given me a unique perspective and appreciation of the unbelievable costs, time involvement and benefits of medical research. I thought the best way to become involved was to search out top-flight scientists interested in researching the cause of this disease and putting research dollars to work toward finding a cure. I was surprised when almost no one knew of the disease. However, one person with whom I work, Joe Verdi, had heard of VHL and said he would try to learn more.
Joe is 100% Californian. He was trained at UCLA and Caltech and is a leader in the field of stem cell biology and tumour biology. He sits on the scientific advisory board of several biotechnology companies and runs a very productive lab dedicated to understanding mechanisms of human disease. He is a passionate, don’t-take-no-for-an-answer individual and family man, who gives his heart and soul to everything he undertakes. In June 2001, Sue, Joe, and I attended the VHL Patient Care Provider Conference at Stanford and were thrilled to meet all of the dedicated, wonderful, family and friends of the VHL Family Alliance. The three of us stood in awe of the great work being done by the Alliance, and felt we had the nucleus and dedication to help here in Canada. After the meeting, I approached Joe about becoming more involved and before I had finished asking, and in typical Joe fashion, he said, "I’m in, let’s rock!" We made several calls to the Co-chair Tania Durand, whose term was coming to an end, and she asked if we were interested in taking over the reins. The three of us decided, what better way to help than to lead?
During our initial discussion, we realized that we had a formidable task in front of us and that none of this could be achieved without the help of a professional finance accountant. To my delight, my best friend, Sylvia Honselaar, who knows Sue and her story, immediately said, "Yes" to my request for assistance. Sylvia obtained her designation of Certified General Accountant in 1997, after graduating with a Bachelor of Business Administration degree from Lakehead University in Thunder Bay, Ontario. She holds the position of senior manager with the London public accounting firm Partridge Skrypnyk LLP. Sylvia is active in both professional development and volunteer work. She has been an elected Director of the London Chapter Board of CGA for the past 5 years. Sylvia is also a Co-chairperson of the CGA committee formed to raise funds for Hospice of London, a local charitable organization dedicated to caring for and helping terminal cancer patients. Now, with all the pieces coming into place, we made the official call to Tania to transfer this responsibility to our hands.
Speaking on behalf of the new board, I would like to acknowledge and thank the outgoing board led by Tania Durand, Paul Bonneau and Michelle Elliott for a job well done, and for setting the bar that much higher. We feel we are ready to fill your huge shoes and are hoping that by the end of our tenure there will be a cure for this disease. Until such a glorious day our main goals will be to continue to aid in a greater recognition of VHL in the medical and public communities, improve the diagnostic capabilities of doctors, lend greater support to the families afflicted and improve the quality of life for people afflicted with VHL. We will continue to keep you updated through our Canadian Newsletter. Stay strong, we are all in this together - We’re a family.
As printed in the VHL Family Forum 9:3, September 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org. |
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