Letter writing campaign for John Robinson

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

Postby mangio » Sat Jun 26, 2010 10:09 pm

xyz,

We will keep writing. Please check your private message box.
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Postby eveable » Sun Jun 27, 2010 6:36 pm

A person with MS dies every day in Canada. But that is okay because 3 people are diagnosed every day in Canada. So the neuro's get a net 2 people a day.
I mentioned the person a day dying of MS in Canada at my MS yoga class last Monday. The people in my class were shocked. One lady told me "They said MS isn't fatal."
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Postby 1eye » Sun Jun 27, 2010 6:46 pm

Depends on how you look at it. The first stat I heard was that your life on average was ten years shorter. So even if you believe that, it's still an accessory before the fact. Somebody in this forum said it was 400 a year. That's more than one a day. I don't know what the real number is, but it's too many, even if diagnosis is faster.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Cece » Sun Jun 27, 2010 9:00 pm

xyz, thank you for posting, yes, we have to keep sending letters.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby 1eye » Mon Jun 28, 2010 6:36 am

got email from Kirsty Duncan asking for Sandra's email - PM me
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Chrystal » Sun Jul 04, 2010 7:01 pm

Please keep writing the letters of appeal on John Robinson's behalf. Thank you.
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Postby Chrystal » Sun Jul 04, 2010 7:15 pm

1Eye, I just saw your posting and e-mailed Kirsty Duncan Sandra's e-mail address. Thank you. Take care.
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Postby foreignlesion » Sun Jul 04, 2010 7:52 pm

I was the one who made a post stating the number of deaths per year. According to Stats Canada's most recent report (2006), there is an average of 433 MS related deaths in Canada every year.

I have found some support in my letter writing campaigns, but have decided to start a new one with a new twist. I am going to write a new letter and mail it to every applicable political player, and I am going to write an op-ed article about the CCSVI campaign, including the letter, and send it to media outlets across Canada. I am hoping to be able to do a follow-up article using the responses I receive. I am hoping this will make the public more aware of the campaign and the responses from the powers that be.

I have been working on this for several weeks, but it has been difficult as I wish to have an all inclusive timeline for CCSVI and I still need to do a full breakdown of the Commons debate. All this while maintaining a full time job, a new household, a marriage and suffering the effects of progressive MS. I know a few people in various media outlets, and I will soon be asking them for help.

I hate how guilty I feel for not being able to do more, not just in this fight, but in all aspects of my life.

It is great to see so many join in this fight, but disheartening that so much of the onus has been put on those of us affected by MS.
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Postby Cece » Mon Jul 05, 2010 11:25 am

Foreignlesion, what an undertaking, you are to be applauded!

For anyone who sent out letters initially, please consider if it is time for another round of letters. For anyone who has not yet sent a letter, perhaps now is the time? Mention your own MS story, mention John Robinson, and let Dalton McGuinty especially know that we know he has the power to advise the OHTA committee to authorize CCSVI treatment on a compassionate exemption basis in Ontario and that we want him to exercise that power forthrightly.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Chrystal » Mon Jul 05, 2010 7:18 pm

Foreignlesion, you are wonderful. Thank you for all you are doing. Everyone else too, thank you.
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Postby Cece » Wed Jul 07, 2010 3:21 pm

Here is a report from Facebook of a lady named Rosemary who was a 9/10 EDSS level and had the treatment recently in Mexico:
Mother-in-law is doing well! Spirits are great! We spoke with my sister-in-law and she is seeing a lot of instant results. Able to turn her head; breathing is easier; feet were warmer; swallowing easier; less pain...and I am sure there is more to come. I will not be posting anymore on this site. I am getting overwhelme...d with emails...and posting the same information over and over again..so I will keep my facebook updated on a regular bases. So if you are interested in finding out details or to follow our journey to recovery...connect with my facebook. Just put the comment MS friend and I will accept. As indicated Rosemary was a 9/10 EDSS level and had the liberation treatment yesterday in Mexico.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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