Clinical Care Centers / Centres de Soins Cliniques

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VHL Family Alliance Canada

Getting to know your Board Members

for 1999-2001

Cliquez ici pour le français

Tania Durand, Ontario

I joined the VHL Alliance in 1996, and after the Bethesda Conference decided to give Paul a helping hand in getting a Canadian VHL Alliance going. I had gone through a rough year with spinal surgery, and felt very much alone with VHL until I meet other people with VHL at the Bethesda conference. I’ve since gone to the Seattle conference, the Paris Symposium and the Atlanta conference earlier this year in my search for information and answers concerning VHL. It’s my fondest dream to unite all Canadian families with VHL under one roof to share in our experiences and further educate ourselves on VHL. We are one huge step closer with our Charity Status awarded earlier this year.

I live on a 100-acre farm in Renfrew, Ontario (1 hr west of Ottawa). I work for a software firm as an administrator and of course spend most of my free time working on Alliance projects such as this newsletter. I have a wonderful husband (Jason) and a very spoiled dog, a husky named Sally. I have spinal, brain, pancreas, kidney and eye involvement with VHL. I’ve had a spinal surgery in 1996 and a kidney/pancreas dual surgery this past February. I’ve been fortunate to have a supportive husband, good friends, family and a lot of TLC from my friends at the Alliance during the past three years. I’m very open, honest and said to have a good sense of humor, even if it is a little morbid. When you’re in and out of the hospital as much as we are, who can help but acquire a warped sense of humor, right? I’ve had a couple nicknames in my day: scooter, pokey, pooky and"just plain slow"(those two were after my spinal op), Blondie and of course the newest"Tracks"because I’ve got them running up front and back now. I’ve never laughed as much as when I picked up a VHL patient who I had never met before and took her out to dinner. I apologized for my driving since I tend to rev the standard a bit, due to the slight feeling loss in my right foot from surgery. She turns to me and says, I knew it felt familiar, you drive just like my friend with the wooden leg. Needless to say our visit was a hit and I hope to meet many of you down the road and share some stories some laughs and a few hugs.

Paul Bonneau, Quebec

When I first became aware of the VHL Family Alliance’s existence through their Internet site back in 1995, I couldn’t believe all the information that was available. I browsed excitedly through the site eating all the information that was accumulated. It was a shock since I could hardly get anything through the doctors, different genetics departments and the usual channels. It was an eye opener and my first reflex was to ask how I could make other people affected by VHL aware of the existence of the Family Alliance.

Thanks to the efforts by the VHL Family Alliance in the medical community for the past 10 years, programs are in place for VHL patients. I was fortunate enough to have my last kidney saved with an emergency procedure at the NIH. Had this happened three years ago, I would be on dialysis as I write this and my quality of life would no doubt be affected.

On the personal side, I am married to my wonderful wife Marie and we have a 14 year old daughter who is thankfully not affected by VHL. She took the courageous decision last year to have her DNA tested and the result was negative. That saved a lot of anguish and unnecessary testing for symptoms. I have had an obsene number of surgeries and all I can say is that today, I’m OK. As for tomorrow, we’ll see.

Michele Elliot, B.C.

My name is Michele Elliott. I live in Surrey,B.C. with my husband and two young children. I always knew that I might have VHL, and I did genetic testing in '96 and it was confirmed. I never experienced symptoms of VHL, yet my father and two of my three brothers had VHL involvement. While I was pregnant with my second child, I started to feel sick. A brain tumor was found and had to be removed.

I went to my first VHL conference last summer in Seattle and found it a very positive experience. It was great meeting others with VHL, for so long my family and I didn't know anyone else with VHL. We always felt isolated. I look forward to meeting and talking with other families here on the West Coast.

Volunteers Needed

NOW that I’ve hit you up for donations and membership renewals, I’m going to hit you up for help. We need volunteers for just about everything. If you have a little extra time and think you could help by volunteering please contact Tania Durand. There are many different types of volunteering such as: transplant investigating, insurance issue, health issues, accounting, fundraising, etc. Maybe if you cannot volunteer a friend or member of the family might want to.

Fundraising

If anyone has ideas on fundraising, please contact us. If you see a good idea pass it on, if your not able to become involved in fundraising, maybe your idea can be used by another member.

Corporate Sponsors

In order to put a conference together it takes 1) People 2) Facility’s 3) Speakers and 4) MONEY. One of the ways to raise money is through corporate sponsors. I’ve enclosed a letter for your local businesses and corporations in hopes that you can approach at least 3 businesses in your area (photocopy if you need more) for sponsorship. These can be large or small; anyone you think might sponsor some amount to the VHL Alliance. Maybe your own company would sponsor us.

Conference Info

I’ve been two 4 VHL Conferences in the last 3 years and I’ve noticed that I’ve been the only Canadian at 3 of them. So I figure there must be a problem with the dollar value, with the Canadian dollar being at a low. So, maybe we should have a Canadian Conference and invite a few specialists up from the USA and maybe-other Countries to talk to us. I NEED YOUR INPUT, I’ve included in this newsletter a short questionnaire, and I would appreciate it if you would fill it out and return it to me even if you are not intending to attend any future conferences. I’ve enclosed a return envelope and postage. The conference will be a joint effort and will only happen if there seems to be an interest. If you would like to host a Provincial meeting please contact us.