Letter writing campaign for Barb Farrell - VICTORY

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

Postby eveable » Wed Jun 16, 2010 7:06 pm

I think we should email or call Deb Mathews. the Health Minister of Ontario and Dalton McGuinty, the Premier of Ontario.

You can reach Dalton at http://www.ontario.ca/premier (there is a contact Dalton at that site) and fax him at
(416) 325-3745
TTY/Teletypewriter:
1-800-387-5559

You can contact Deb Mathews at ccu.moh@ontario.ca or you can call the Minister's office at 416-327-4300.

It is Ontario that is stopping this.
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Postby Vhoenecke » Wed Jun 16, 2010 7:41 pm

What a saint Patrick is for helping the hospital when they didn't help him. He is in my prayers.

Val
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Postby Cece » Wed Jun 16, 2010 9:09 pm

I read through some of the context on the Facebook page. There was a plan forming to have a sit-in at the hospital that Mr. Farrell specifically opposed. I don't think he is objecting to our continued campaign on his behalf to the politicians themselves. But I do want to wait until he speaks again on the matter. My heart goes out to him and his family.

Thanks eveable for the the contact info on Deb Mathews and Dalton McGuinty.

edited to add: although I agree 100% on canceling it per Mr. Farrell's adamant wishes, I am impressed with the idea of a sit-in....
Last edited by Cece on Thu Jun 17, 2010 9:52 pm, edited 1 time in total.
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MS

Postby eveable » Wed Jun 16, 2010 9:52 pm

It is funny, I am not reminded that I have MS untill I post on this site. Actually after, when I read my post and see the mistakes, then I remember I have MS. I know I am lucky but I did make my husband promise me tonight that if I get worse and cannot get out of this country, he will get me out and get me the procedure. I am on the list for Albany so hopefully I will beat the getting worse and being in Barb Farrells situation.
I have 3 people in my MS group, one in particular, who are in danger of getting to that spot.
A pox on politicians and assorted money makers who really do not care if we die.
I am going to the Toronto meeting on July 2nd. A lawsuit is just what Dalton needs.
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Procedure denied for Barb Farrell

Postby eveable » Thu Jun 17, 2010 7:26 am

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Postby Cece » Thu Jun 17, 2010 9:00 pm

Barb Farrell is waiting, almost against hope, for someone, the right one, to change their mind.

I am still not clear on who that someone is...is it Deb Mathews?

Also from the article is the hospital's side of it:

Dr. Russell Price, interim chief of staff at RVH, said those at the hospital have carefully deliberated over the issue of treatment for patients with multiple sclerosis during the past three days.

Meetings with the hospital's ethics and medical advisory committees took place Wednesday.

"The recommendation was we would not provide this procedure to MS patients in the absence of research," he said. "It's not even being provided anywhere in Canada."


Apparently Dr. Hubbard has reached out and provided assistance (to Sandy MacDonald? or someone else? I'm not clear...) on how he wrote his proposal that has passed irb. So maybe that will be the answer? Could they get a pilot study launched and do this treatment then?
eveable wrote:I have 3 people in my MS group, one in particular, who are in danger of getting to that spot.

This is awful to hear...can anything be done?
"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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RVH

Postby eveable » Fri Jun 18, 2010 5:21 am

Hi Cece, That statement by the hospital
"The recommendation was we would not provide this procedure to MS patients in the absence of research," he said. "It's not even being provided anywhere in Canada.".


was so annoying.
Russel Price is talking like if you allow one person to have this, the floodgates will open and we don't do that in Canada.

As to the people with MS in my group, one is no longer coming to meetings, yoga or swimming, no longer answers the phone or emails. Very hard to communicate with her. The other two attend sometimes and are aware of what is going on. They will have to leave the country to have the operation. We have a meeting coming up July 2nd about this.
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Postby pegmegrund » Sat Jun 19, 2010 6:47 am

Great News!

Patrick just posted on a fb page that Barb will receive treatment in 4 days!

http://www.thebarrieexaminer.com/Articl ... ?e=2630382

:D :D :D
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Postby bestadmom » Sat Jun 19, 2010 7:44 am

This is fantastic news! There are angels among us.
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Postby Algis » Sat Jun 19, 2010 8:00 am

YES!! :!: :!: :!:
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Postby HappyPoet » Sat Jun 19, 2010 8:00 am

My heart is filled with JOY for them.
Godspeed.
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Postby ErikaSlovakia » Sat Jun 19, 2010 8:13 am

pegmegrund wrote:Great News!

Patrick just posted on a fb page that Barb will receive treatment in 4 days!

http://www.thebarrieexaminer.com/Articl ... ?e=2630382

:D :D :D


Wow, that is GREAT! :)
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby SoberSandy » Sat Jun 19, 2010 1:22 pm

I am soooooo please for them. I wish them all the best.
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Postby Cece » Sat Jun 19, 2010 1:39 pm

What was that quote again? Never doubt that a small group of like-minded individuals can change the world, indeed it is the only thing that ever has?

Barb Farrell has succeeded in her quest for treatment. I am marking this first letter-writing campaign closed in victory...and I am smiling today!!
"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 mangio » Sat Jun 19, 2010 1:58 pm

Indeed SAINT CECE.
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