1st Canadian Patient Summit Toronto (March 28 & 29)

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

Postby iggy » Wed Mar 31, 2010 1:11 pm

Thanks Brightspot, Chrystal, SoberSandy and Brian for representing us at the conference. Your intelligent and informed participation is a real gift to us all!
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Re: MS SOCIETY NATIONAL VP OF GOVERNMENT REALTIONS SAYS...

Postby ljh » Wed Mar 31, 2010 1:34 pm

Brightspot wrote:I had the opportunity to talk with Deanna Groetzinger, National Vice President, Government Relations, Multiple Sclerosis Society of Canada. She was attending the First Canadian Patient Summit, which she was on the steering committee for. I understood that she had been working on the steering committee for some months . No where on the MS Society website could I find any mention that there was Canadian Patient Summit under developement. It was not posted on any of their websites, and I am told no mention of it was on their official facebook site. Interesting that they would not wish to share information about their involvement in this summit prior to the summit taking place.
When I approached her, and mentioned my interest in CCSVI, Ms. Groetzinger said to me "there has only been one study". It appears from her title that she is representing the interests of MS Patients to our Government. I found this alarming.
To her credit, Ms. Groetzinger did agree to meet with five of us at our request. Chrystal, SoberSandy , Brian (a well spoken representative of msliberation), and young woman who is a university student recently diagnosed with MS, and I sat with her and explained our concerns. I cannot say I am confident that any progress was made.
I did invite the MS Society to make a public statement that on the basis or recent scientific evidence that it would seem prudent for G Ps to screen MS patients to see if they also have a condition of compromised vasculature.
Please do not hold your breath on this one. Your brain needs all the oxygen it can get.

Thank you for bringing to our attention the involvement of the MS Society in this conference- and I'm not holding my breath!
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Postby Chrystal » Thu Apr 01, 2010 7:34 am

A HUGE "Thank You" to you too, Brightspot, for your strong advocacy at the 1st Canadian Patient Summit on behalf of MSers fighting to have CCSVI testing and procedure available to all MSers in Canada.
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Postby TFau » Thu Apr 01, 2010 9:31 am

Chrystal wrote:A HUGE "Thank You" to you too, Brightspot, for your strong advocacy at the 1st Canadian Patient Summit on behalf of MSers fighting to have CCSVI testing and procedure available to all MSers in Canada.


Ditto from me!
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Postby annad » Thu Apr 01, 2010 10:04 am

And from me too!
I've thanked Brightspot privately but this is a big public THANK YOU and to all the others who went on our behalf!
a
:)
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Postby mangio » Thu Apr 01, 2010 11:02 am

Bspot, Thankyou Thankyou for all your advocacy. Shame on them.
I called the lovely mentioned above and really expressed my heart felt
disappointment. The MS Society does not represent me. Everyone,
even if we do not have a direct say at the national level you most
certainly do in your daily activities. Cut the cord and the gravy train.
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Postby SoberSandy » Fri Apr 02, 2010 11:08 am

Here is a website worth looking into - Patients' Association of Canada - heard about them at the Patient Summit - very strong about patient advocacy - www.adppa.org. This is a website regarding advocacy: www.advocacysolutions.ca - should be helpful also.
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Postby Brightspot » Sat Apr 03, 2010 10:23 pm

Also if you are not getting the screening and treatment that you feel you should be getting from the health care system in Canada you should let Health Canada know.

They deal with concerns from people not getting the care they need. You could address it to:

Ms. Lucie Desforges,
Director,
Office of Consumer and Public Involvement,
Health Products and Food Branch, Health Canada.

address is
11 Holland Avenue, Holland Cross
Tower A, Suite 513 A.L 3005A
Ottawa, Ontario
K1A 0K9

or email lucie_desforges@hc_sc.gc.ca
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