letter writing campaigns

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

letter writing campaigns

Postby Cece » Tue Oct 12, 2010 5:49 pm

There was a week in June that went crazy-fast: an article was published in the Barrie Examiner about Barb Farrell, who had been next in line for procedure from Dr. MacDonald when he was shut down, and who was declining fast. She touched all of us. Maybe it was the picture, maybe it was how close she'd gotten, maybe it was her husband and son strong by her side but helpless against this. We started a letter-writing campaign that was perhaps too strong in numbers, considering that her husband called us off from writing the hospital itself when they were overwhelmed with it. The hospital turned her down. Devastating.

This was when I was in touch with John Robinson's family and made the promise that the following Saturday, one week to the day when we launched the letter-writing campaign for Barb, we'd launch a campaign for him. I wrote up the post, saying that it was important to keep writing for Barb too, that we would shine a spotlight on this, that she was one of many. When Saturday came, and I was ready to launch John's campaign, to my utter shock an anonymous donor stepped forward. Barb was to be airlifted to treatment. Even though we had not won against the politicians or the hospital board, we had raised publicity and touched someone's heart and made a difference for Barb Farrell, her husband and her son. I am proud of what we did.

We then wrote letters on John's behalf and I am happy to report that he has received the treatment and has had some improvements as well.

If we were to do another letter-writing campaign, what would we address? What comes to my mind is the lack of follow-up care. Canadians who travel for treatment (and spend their life's savings in the process) come home to doctors who will not provide care. Canadians have committed no crime by getting this procedure done. Many will not have post-procedure complications, but some will. The main risk is clotting. Left untreated, clotting could block a stent or a vein permanently. There is also a risk of the clot breaking free and causing a pulmonary embolism. Such patients will be treated in Canadian emergency rooms, but this is neither the cheapest nor the humanitarian route. Clotting can be monitored by Doppler imaging and treated with anticoagulants or catheter venogram thrombolysis. It is best caught before it has gone too far.

What do you guys think? I'd want to write letters with the specific points for what we are asking. I'd want us to send these letters to the people who have the power to make it happen. I wouldn't mind having someone willing to have the campaign centered on him or her, so that when we wrote it wouldn't be for anonymous Canadians but for a specific individual left at risk because doctors won't provide post-procedure care.

This is just one idea and I am open to other ideas. There is strength in numbers. I also haven't been following Canadian CCSVI politics, if anyone cares to catch me up. With all the progress elsewhere with the availability of this treatment, there ought to be progress in Canada too.
Last edited by Cece on Tue Oct 12, 2010 9:03 pm, edited 1 time in total.
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Postby sbr487 » Tue Oct 12, 2010 7:51 pm

sent a PM
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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