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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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TMrox
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PostPosted: Sun Jun 13, 2010 9:37 am 
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Thanks Cece,

What a brilliant idea. I'll post tomorrow lots of letters from the UK and also email to the addresses provided.

I've put info about your appeal in myelitis.org. I've got Transverse Myelitis (a conditon similar to MS) and was treated for CCSVI recently. A few TM patients like me know about CCSVI and we are eager to hear the extent to which CCSVI might also be related to TM.

My symptoms have improved considerablysince my angioplasty and I know from own experience that CCSVI can make a real difference.
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pegmegrund
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PostPosted: Sun Jun 13, 2010 10:50 am 
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Patrick Farrell, Barb's husband, has posted on Joan's CCSVI in Multiple Sclerosis Facebook page... please go here:
http://www.facebook.com/pages/CCSVI-in- ... 297?ref=ts
and show him your support, in addition to emailing!

I also emailed the Barrie Examiner to thank them for covering this important story: news@thebarrieexaminer.com

... and, this is copied from a fb post by Christopher Alkenbrack:

"Send personal message to Barb, and let her know that we are behind her. Be encouraging, supportive, and give her and her family best wishes....here`s what to do:

1. Go to the hospital website : http://www.rvh.on.ca/Home.aspx?PageID=2 ... enuItem001

2.... Scroll down to : I would like to send a message to a patient now.

3. Fill out the form: Barb Farrell"


Last edited by pegmegrund on Sun Jun 13, 2010 2:44 pm, edited 2 times in total.

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CRHInv
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PostPosted: Sun Jun 13, 2010 11:31 am 
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I'm in. Emails sent. I don't think I have ever mailed anything to Canada. Do I just use a US postage stamp, or how do you do that? Sorry, for the dumb question.

Cece thanks for getting this going and to all that contributed!

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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pegmegrund
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PostPosted: Sun Jun 13, 2010 11:53 am 
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You can use regular US stamps, but it is considered international, so it is a bit more. It looks like postage for a letter from US to Canada is 75 cents based on usps.com.
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Cece
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PostPosted: Sun Jun 13, 2010 12:12 pm 
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thanks, I've added the information about stamps to the first post too...I didn't know either...

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Catra
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PostPosted: Sun Jun 13, 2010 1:57 pm 
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CRHInv wrote:
I'm in. Emails sent. I don't think I have ever mailed anything to Canada. Do I just use a US postage stamp, or how do you do that? Sorry, for the dumb question.

Cece thanks for getting this going and to all that contributed!


CRHInv, I believe it costs a bit more postage as it does here in Canada. I think you must put on $0.75 stamp to mail from US to Canada.

There is no cost to mail a letter to members of parliament (MPs) in Canada when mailing from within Canada.
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eveable
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PostPosted: Sun Jun 13, 2010 2:17 pm 
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I'm in. Emails sent and faxed as well as a note sent to Barb at the Royal Victoria Hospital.
How do I get to the facebook page?
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Cece
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PostPosted: Sun Jun 13, 2010 2:24 pm 
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eveable wrote:
How do I get to the facebook page?

http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts

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"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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pegmegrund
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PostPosted: Sun Jun 13, 2010 2:45 pm 
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Oops - forgot the link to Joan's page earlier. Thanks, Cece. I edited my previous post to include it.

By the way, Cece, you're awesome. Thanks for getting this started.
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eveable
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PostPosted: Sun Jun 13, 2010 3:50 pm 
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Thanks Cece, I got there after a few hours of looking. I called Deb Mathews and left a message demanding that she call me back tomorrow with:
a) the date for Barb's procedure
b) who cancelled her first procedure.
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pegmegrund
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PostPosted: Sun Jun 13, 2010 5:19 pm 
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Update from Patrick, Barb's husband:
Quote:
>>> Breaking News<<<<
I have it on very good information the my wife’s treatment has been blocked by Janice Skot , the CEO of the Royal Victoria Hospital It is NOT MOH, the college of Physicians and Surgeons that are blocking it!
Write the Ms. Skot, the Board and demand that she be given this surgery under emergency compassionate grounds. Also remind them that RVH is fundraising and not providing care. That doesn’t bode well for future fundraising efforts.
Please do NOT harass or annoy the Staff at RVH they are great folks who are keeping Barbara well.
Send your email to: Janice Skot: skotj@rvh.com l also try: Suzanne Legue, Phone: 705-728-9090 Ext 41600, Email: legues@rvh.on.ca
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Cece
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PostPosted: Sun Jun 13, 2010 6:13 pm 
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thank you, pegmegrund!

I'll add these two names to the first page list and take off the Barrie MP and MPP that are said to be on Barb's side already. I just need to find a postal mail address in addition to the email address to put up there.

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"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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mangio
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PostPosted: Sun Jun 13, 2010 6:20 pm 
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Cece, you have a golden heart!
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flipflopper
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PostPosted: Sun Jun 13, 2010 8:58 pm 
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done!
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BOOP
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PostPosted: Sun Jun 13, 2010 9:21 pm 
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DONE AND DONE!!
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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