Quick Links
For more information on Cystic Fibrosis please visit the Canadian Cystic Fibrosis Foundation at www.cysticfibrosis.ca
Each province in Canada has active Chapters. There are a total of 50 chapters located in Canada. Individual chapters are made up of volunteers who are deeply committed to finding a solution to CF. They organize and stage fund raising activates, raise awareness of CF in their local communities, and support family and friends who are coping with CF daily.
Click here to find a CCFF Chapter near you.
Contact Us
Canadian Cystic Fibrosis Foundation
Vancouver and Lower Mainland
4050 Graveley Street
Burnaby
British Columbia
Canada
V5C 4A5
Telephone: (604)436-1158
Our chapter office is open
Monday-Friday from 9:30am-5:00pm
|
Bill Markvoort\'s Blog
|
For some riders the climb from Hope to Allison Pass was the dreaded day, for others, myself included, Day 4 was the climb I wanted to put behind me. Perhaps it was the name, Anarchist Mountain (or Antichrist a someone chose to call it), or perhaps it was the fact that the climb started right from the courtyard entrance, or perhaps the idea that you were climbing for the first 30 km., but nevertheless this was the one that based on the profile had me concerned. Therefore it was such a relief to find out that yes it was a grind that never seemed to end, but that the grades were actually quite gentle, which allowed us to spin up with only reasonable effort. It also helped that at our start time of around 8:30 or so, the temperatures were a reasonable low to mid 20’s instead of the Osoyoos norm. I wore a heart monitor and for the duration of the climb I kept it zoned into 120 to 135 which is quite sustainable. The climb itself was very scenic, that is when I actually looked around, with sweeping views across the valley and down on Osoyoos, the town and the lake. In the distance one could see Highway 3 across the valley and the Richter Pass which we had descended yesterday. Very slowly we climbed higher than yesterdays summit. Our first quick stop was at the lookout and then onwards and upwards because it was warming up. The grades stayed constant, the shoulders were quite wide and clean and the odd chip or logging truck roared slowly past us. Relatively speaking there was very little traffic. An RCMP officer commanded Mark Nassan to ride on the shoulder not the road as he prefers to do. At the 20 km mark we got some relief with a 3 to 4 km descent then another 400 metre climb to the summit. By now we were in high forest, ranch and recreational property. We had some fun and a photo-op with a Sasquatch carving near the summit and then enjoyed a very quick but safe descent into Rock Creek. Last year this road was under construction, this year it was one long swoop at 50 km plus. I followed Brian Rose who set a fast pace all the way to Midway. The highway followed the river so the grades were all slightly in our favour. In a vehicle this might all seem flat but to a cyclist going with the river versus going against the river makes a world of difference. We arrived in Midway right at lunch time and Fran had picked a lovely rest stop in the shade and right beside the river. Cold baths for hot limbs do work, so I stripped my shoes and socks off and stood in the river, which definitely had the requisite coolness for as long as I could handle it. Fran had lunch all set out and we pounced on the food as soon as it was prepared. All too soon it was time to put on the shirts and socks and head back out to the Highway. We had a solitary honour guard of a young boy on a bike who kept our pace until another RCMP cruiser hailed him back. A nascent cyclist for future years. We took it easy in the second climb of the day and stayed relatively together. One good piece of news. Sandi had ridden in the vehicle for the morning, but tested her knee at lunch, changed and came back on the road and had a great afternoon with no pain in her knee. It is not hard to imagine that it was not easy for her to watch all her friends cycling up the big hills and knowing you have trained so long and hard and then to be relegated to the car. We cycled through Greenwood which is a town frozen in time and trying to stay alive as a tourist haven much like Chemainus on Vancouver Island. Lovely old houses and restored stores and white wooden churches. After a second long but uneventful climb we again had the pleasure of a 15 km descent into Grand Forks with the knowledge of no more climbing at the end of this descent. Our destination was Johnny’s Motel, a charming old fashioned riverside motel with a grass lawn and tables right beside the river. We had our post ride beer and wine while sitting in the water and life indeed was very, very good. Bill PS I hope Claude gets this in time for his morning coffee, thanks by the way for your email, it prompted me to keep this posting going.
|
|
|
This is the longest day on the Memorial Route and also the day we say good-bye to half our team as we will split at Keremeos toward the two different destinations. It was decided the cyclist would go in reverse order of their speed so that we wouldn’t get too separated over the long distances. As a result some riders were in the saddle by 7 am after a quick breakfast of cereal and coffee (and bananas, cyclist love bananas). Today we had an extra rider as my son, Hunter, a support driver normally, joined John Edworthy, John Joyce, Brian and myself for the day. Today was long but also a lot of gentle downhill grades as we followed the Similkameen on its journey to the USA for most of the day. This downhill ride was interrupted by a quick climb up to Sunday Summit and then a twisting route past the hairpin creek turns towards Princeton. The long grade by the copper mine allowed for a high speed descent. Mark Nassan, our mechanic, told me later that he experienced a serious high speed wobble at the turn which gave him quite a fright. He is riding a 30 year old steel bike (Colnago, I believe) that was used in the movie Breaking Away (remember the wannabe Italian kid in Iowa who loved to bike). Just past the mine Hunter had his first of 3 flats in succession and depleted our long stem tire supply and so had to wait for the sag wagon. I also saw my second bear of the day (the first just at the exit from Manning Park right by the bear carving). Chris B our German rider who hasn’t seen a bear yet in Canada doesn’t believe any of this of course. We paired up with Hilda, David Strange and James Z and got a very fast ride from Princeton to Bromley Rock, averaging well over 35 km/hr. Lunch was beside the river and I took the opportunity to grab a quick dip to wash all the exertions away. Cold icy baths are all the thing for cyclists after a ride, I just had mine a little early. I told Chris about my bear sighting but he was most unimpressed. Again after lunch we set a good pace with a group of riders including Hunter who was all patched up again, but at a much lesser speed knowing we had 80 km to ride and one big pass to climb. We had a quick break in Keremeos and said goodbye to our Veteran cycling and support companions, at least those who were there and then set off on Highway 3. The Similkameen Valley from Keremeos down, is just a marvel of river flats, dry mountains, wine orchards and mixed farms. The highway had a lot of rolls but the trend was downgrade as we were following the river. Then of course all good things had to end. The river turned South for the border (the Americans are threatening to flood this river even into Canada for a power project) and we started our long ascent up the Richter Pass. It doesn’t show as being that long or arduous on the profile but I guess at the end of a long day a multiplier effect kicks in. Also it didn’t help that there was a false summit to be followed by a short descent and then the real summit exposed itself above us. David and John E. and Brian and I were the first ones in town just before 5 pm. John Joyce joined us shortly thereafter and Hunter came in with Mieko and several others. Over the next hour the rest rolled in for a well deserved beer. One sad turn of events is that Sandi who had been suffering from knee pains for the past few months even during training couldn’t complete the full leg due to the increasing pain and discomfort and had to take a ride into town. Sandi is in superb shape but the knee had the best of her. We will have to see how that unfolds and whether she can cycle in the days to come or at least a portion of the days to come. Well it is now 6 am and the troops will soon be awake. My journal is up to date and hopefully I can find a place to put it on the Internet.
|
|
It is actually the beginning of Day 4, I am sitting at a kitchenette table at the Sahara Motel in Osoyoos and it is 4:45 am and the first light is just glimmering over Anarchist Mountain the mountain we start off with in a few hours, but I can’t sleep so I thought I would try to catch up on my journal. Yes it has been difficult to post not because I don’t have time or am too tired but being a social animal I would rather have a post cycling chat and beer with my colleagues. Then it is time for dinner and very quickly thereafter its beddy-bye time. Back to Day 2. I was riding with John Edworthy and my SFU mates, Sandi, Brian and Mieko. We were first out left Harrison quite early at about 8:00, the weather was mixed with some people suiting up for rain and others, myself included, just hoping it would improve as we exited the valley. It did stay cloudy but it didn’t rain so we had an uneventful ride to Hope and made good time on the straight Highway 7 stretches heading into Hope. At Hope we stopped to take photos in front of the May Trucking office (some sponsors there) and then to my real destination, before the climbing started, the Home Café for coffee and ice cream. As were enjoying out treats other cyclists started swinging by on the old highway 3 and Mieko became concerned we might get left behind. I was fairly convinced that our climbing skills would soon bring us back into the pack and that is how it did turn out. Once back on the Highway we swung toward Highway 3, the Crowsnest Route and left a lot of the traffic behind that was heading up the Coquihalla. Yes, 10 mile hill culminating at th Hope Slide was a grind (about 2400 vertical climb but the grades weren’t too steep and we could spin up at 13-14km/hr) After a shirt refuelling at the slide parking lot we headed out and followed the Sumallo River downstream for 15 or so km. before heading uphill again against the current of the Skagit River. Again the second climb was long but not particularly steep except for the last few kilometres where it got to 5% or so I did not find the summit that difficult. Allison Pass peaks out at 4200 feet so there was a lot of climbing involved. The last 10 km was a glorious downhill swoop to Manning Park Lodge, although Avi and David managed to overshoot by 15 km and ended up at Eastgate and were bussed back. The weather had turned for the better and although not hot we could sit on the lawn at the Last Resort and have a beer and everyone took the opportunity to clean their bikes. Well almost everybody as some people paid to have their bikes cleaned (a service offered by Chris Kvan’s brother Dave who set up a this service for ten dollars a bike). A few middle aged guys jumped all over this offer and we had some very shiny bikes the next day. That evening the Kinsmen from Coquitlam served us a big spaghetti dinner, and afterwards some of us went for a hot tub followed by beer and pool at the Manning Park pub. I also heard stories of some hanky-panky in the Pinsky room with Max and many other women but I won’t comment on that. Also on a separate note photos will soon be posted of what is left of Sandi's Ipod after it took a turn through the chain and rear wheel of her bike.
|
|
We are now safely in Harrison Hot Springs 112 km from our start in White Rock this morning.The Kinsmen treated us to a wonderful steak and chicken dinner, wine and beer included after also feeding us at lunch in Mission earlier in the day. We met at White Rock at 8:30 this morning, both the Jasper and Banff groups are riding together for the first 2 and a half days so it was a collection of 30 cyclists, four vehicles, many family and friends and a few cycling friends to send us off and ride with us to the Albion ferry. Thank you, Jay and Colin, Lutz and Gord for being there to give us support. Even the mayor of White Rock was there to give us an official sendoff. Finally out of the chaos of packing bags, photo opportunities with family and friends, last minute paperwork, etc, order descended and by 9:30 we wheeled out onto 8th Avenue, towards 200th Street. Well within 10 minutes my game plan had gone out the window. Instead of settling into a 25-27 km pace as I had planned to do, as this after all is a marathon undertaking, I got caught up in riding along with the Big Dogs, James Z, both Chris’s, David, Simone, John Sullivan, Jen and Hilda, mostly in other words the Veterans Group. John Edworthy and Brian Carlson and I hung on for dear life as the peloton moved along at 35 km+. At this pace the Albion ferry wasn’t far down the road. Again on the North side of the river we set a strong pace and arrived in Mission at 11:30. There the Kins clubs had tables and tents set out and a wonderful lunch. The ride after lunch was relatively uneventful but we did encounter headwinds and a pell-mell descent of the hill just past the Harrison River where I very nearly took out both Chris Kvan and myself as I could not hold my turn in the steepest corner of the descent. All went well but lessons were learned. Chris is from Boston and rides with his brother David who helps Chris with his physio, because Chris has CF. When we slow down or stop he has the telltale CF cough but his aerobic capacity is huge and he was in the lead group all day long. Very amazing for all of us but particularly for me as the father of a CF child. Check out Chris’s bio as he also races back East. Everyone is safe and sound but tomorrow is a huge challenge as we climb the Hope Princeton and add on around 130 km. See you tomorrow if I am not too tired to post. Bill
|
|
June 20, 2008 Well it’s Friday, the day before our departure and we are ready to go. The fundraising is almost completed and overall the cyclists have raised over $170,000 for CF. Mind you there is still plenty of room for donations so please log onto the website if you want to add to the total. Donate to your favourite rider or just make a donation in general. It would be great if we can crack the $200,000 mark. We have our send-off party tonight to get our final briefing, there are still some mechanics MIA somewhere between New York and Vancouver but I am sure that will be sorted out by tomorrow morning. Fundraising has dominated a fair amount of my time this past month. I want to take this opportunity to thank the amazing group of people who have donated to the Canadian Cystic Fibrosis Foundation and sponsored me on this undertaking. First I want to thank my first major pool of sponsors, that being all our family and friends and friends of family who were linked by email as a result of Eva’s lung transplant last October. I still had this list and the response to a request for donations to this ride was phenomenal. Secondly I want to thank my daughter Eva, the root cause for my involvement here, who very innovatively put together a YouTube video of a training ride up SFU with Sandi, Mieko and Brian (the hill is a lot steeper than it looks on screen) and intercut it with photos of Eva and I over the years as well as a short clip of her before and after the operation. It resulted in a powerful video and donations have come from all over the world. Thirdly I tapped quite strongly into my work related acquaintances and peers and again received very strong support from this group particularly my own company Probyn Log Ltd. Last and certainly not least our neighbours in New Westminster and Queens Park came out in strength to a garden party last Saturday and collectively made a very significant contribution to the cause. Thank you one and all, I feel both humble and blessed by this tremendous show of support. So I am ready to roll. The weather looks OK for tomorrow with very pleasant temperatures and only a 40% chance of showers (that is a good forecast compared to the past three months). Even Osoyoos which is normally in the mid 30’s this time of year only shows a high of 27 when we cycle through next Tuesday. I have a new body (22 pounds and 2 belt notches lighter) and a brand new bike. It is a Cervelo CS full carbon with a compact crankset and a DuraAce gruppo (for the gearheads reading this blog) and is a dream to ride. My son Hunter is one of our support drivers on this trip, which makes me think of a popular credit card advertisement. New bike $4291…new shoes $250…..new cycling shorts $65….Having your son pack your bags and make your lunch…….Priceless! Hee…hee …sorry Hunter. That’s it. I will be posting during our trip. Send an email to
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
if you want to post back or log on to my Facebook under the same name. Again a heartfelt thank-you for your support. Bill
|
|
This Saturday, June 7, a mere two weeks away from lift-off, found us once again at Yew and Cornwall, at the other Starbucks. Chris Blohmke, David and Zach Speert, and James Zlotnik all showed up resplendent in their new GearUp4CF kit, although only James had the courage to wear his new leggings. On our route through Stanley Park we had to skirt the World Triathlon Championships which were shivering their way through to a Sunday climax and managed to avoid the nude cyclists altogether who were goosebumping and climaxing their way for some purpose or another elsewhere in the city.
We met Hilda in Park Royal (at the Starbucks of course) and then set off on a Westerly route to Horseshoe Bay along the now familiar Marine Drive. The objective today was a big climb up Cypress, a wished for bear sighting on Chriss part and a long run around UBC and into Steveston to capture that important Time In The Saddle. All went according to plan until Chris broke a spoke and had to detour to a West Van bike store while we slogged up the big hill. That completed we met Chris for lunch and then headed to UBC and parts beyond. The weather improved as the day went on and the now visible CF togs looked very bright indeed. Check Jamess photo blog for more details. I had to break off at Cypress St and head back to town whilst the others went for distance and captured 167 km. My tally a more middling 125.
On Sunday Brian Carlson and Sandi Saunier and I drove to Chilliwack to rendezvous with John Joyce and his Shadow group. John had an extended route planned for the 4 of us while the Shadows did their own more leisurely route. John did not mention that his extra 20 km. also involved about an extra 700 metres of climbing as we rose higher and higher into the back roads on Promontory Ridge and Ryder Lake. I was expecting snow around the corner and whinged non-stop. We finally hit the flat lands again near Veddr Crossing and headed direction Yarrow. There we had a second detour up the hills. We came back by Tolmie Road, Dukes Pub, and a close encounter of a F150 kind, which made us reflect on the safety of Ipods on the road. We broke for lunch at the Rhombus hotel as always and once again John had to cajole us out of our relaxed lunch routine.
The afternoon leg was a breeze, flat with no wind, and we cycled West until we could go West no longer. (Popkum Road). We came back by Highway 9 until we hit the Agassiz Bridge at which point we exited onto River Road for the long ride home on the dyke. Very scenic with a flooded Fraser on one side and a Dutch landscape on the other. 125 km. again
. .hence a Double Header.
|
|
|
|
|
<< Start < Prev 1 2 3 4 Next > End >>
|
|
Page 2 of 4 |
Is there a cure?
As yet, there is no known cure for CF, but there is real hope. Comprehensive treatment programs have dramatically extended the life expectancy of persons with CF and many are living into their 20s, 30s and beyond.
Recent years have seen remarkable progress in CF research. Since 1989 when Canadian researchers discovered the gene responsible for CF, global research to find a cure for the disease has brought us closer and closer to a solution.
The astonishing pace of CF science suggests that there is good reason to feel optimistic about the future.
How does CF affect daily life?
For persons with CF, life includes a daily routine of therapy and periodic visits to a CF clinic. Otherwise, most individuals with cystic fibrosis lead normal lives, for many years, in terms of education, physical activity, and social relationships. Eventually, however, lung disease places increasing limits on daily life.
Thanks to the advances in research and clinical care, growing numbers of children with CF are surviving into adulthood. In 1960, when the CCFF was founded, a child born with cystic fibrosis rarely lived four years. CCFF is one of the few organizations that maintains extensive records, tracking a CF patient from first diagnosis. This data base called, the Canadian Patient Data Registry, is proving that advances have been made with the recent announcement that the median age of survival of Canadians with CF has reached its highest point ever: 37 years of age. This means that Canadians with CF now have a 50% chance of living beyond the age of 37. While this is positive news, the need for a cure is crucial for the 50% who won't reach the age of 37.
Over 41% of all Canadians with CF are over the age of 18 years. These men and women are pursuing post-secondary education, careers and many are having families of their own; a tremendous accomplishment, but not enough.
|
