Letter writing campaign for John Robinson

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

Letter writing campaign for John Robinson

Postby Cece » Sat Jun 19, 2010 1:51 pm

On the heels of Barb Farrell's successful quest for CCSVI treatment, I am initiating a new letter-writing campaign on behalf of John Robinson of Ontario, Canada.

Here are some facts about John:

* He is in real danger of dying from MS.
* He is confined to his bed and on a feeding tube as a result of MS. After fifteen months in the hospital, he is now stable enough to be home with his family, but continues to need round-the-clock care.
* He is a much-loved husband and father to two children.
* He was a supervisor in a prominent dairy, but because of MS, he has not worked in fourteen years.
* It is his fervent wish to have the CCSVI treatment.
* This would be done by percutaneous venoplasty, a minimally invasive surgical procedure which is commonly done on an outpatient basis under limited anesthesia.

Here is what to ask for in the letters:

*For a compassionate exemption to be granted immediately so that John Robinson may receive the CCSVI treatment from Dr. Sandy MacDonald of Barrie Vascular Imaging or any other local doctor willing and able to treat him.

Here is where to send the letters:

*Deb Mathews, Health Minister of Ontario
242 Piccadilly Street
London, ON N6A 1S4
Tel: (519) 432-7339
Fax: (519) 432-0613
Email: dmatthews.mpp.co@liberal.ola.org or ccu.moh@ontario.ca
416-327-4300.

*Dalton McGuinty, the Premier of Ontario
Legislative Building
Queen's Park
Toronto ON M7A 1A1
(416) 325-3745
TTY/Teletypewriter: 1-800-387-5559
dmcguinty.mpp.co@liberal.ola.org


* Julia Munro, MPP
Queen's Park Office:
Room 204 North Wing
Legislative Building
Queen’s Park
Toronto, ON M7A 1A8
Phone: 416-325-3392
Fax: 416-325-3466
julia.munro@pc.ola.org

* Peter Van Loan, MP
Federal Government Office Constituency Office
York - Simcoe
Room 750
Confederation Block
House of Commons
Ottawa, Ontario
K1A 0A6 45
Telephone: 1-877-738-3748
E-mail: VanLoP0@parl.gc.ca Telephone: (905) 898-1600

* Minister of Health Canada postal mailing address:
The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9
Aglukkaq.L@parl.gc.ca

* If mailing from the USA, you will need to use 2 US postage stamps to cover the 75 cent rate to Canada.

* These are the federal politicians who took part in the Take Note Debate on the 14th of June who were pro-immediate CCSVI treatment & testing in Canada or who had a loved one with MS, many many of them from Ontario, just copy & paste the email addy row to your "to" line in your email:
Duncan.K@parl.gc.ca; Hughes.C@parl.gc.ca; Maloway.J@parl.gc.ca; BrownPa@parl.gc.ca; Coady.S@parl.gc.ca; Foote.J@parl.gc.ca; Casson.R@parl.gc.ca; Allen.Ma@parl.gc.ca; Miller.L@parl.gc.ca; BelanM@parl.gc.ca; Braid.P@parl.gc.ca; Julian.P@parl.gc.ca

Kirsty Duncan
Carol Hughes
Jim Maloway
Patrick Brown
Siobhan Coady
Judy Foote
Rick Casson
Malcom Allen
Larry Miller
Mauril Belanger
Peter Baird
Peter Julian

Here is why I am asking you to write a letter:

* Mr. Robinson is very ill from MS. He has little to lose from this procedure. He is not hoping to walk or run. He is hoping for the progression of his MS to cease. He is hoping for the strength to use his wheelchair. He even dares to hope to someday come off of that feeding tube and eat real food once again.
* We need to keep the heat up on this issue and on the politicians who are making life-and-death choices for people whose names they do not even know.

************************************************************
Please post here if you will be joining this letter-writing campaign. This is open to people from any country. I also ask that you forward this by email to anyone who might also be moved to write a letter on his behalf or repost it anywhere it might bring further attention to John Robinson's cause.
Last edited by Cece on Mon Jun 21, 2010 8:56 am, edited 9 times in total.
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Postby 1eye » Sat Jun 19, 2010 2:27 pm

I will. Could just one of you cc Dr.Duncan (so she don't get spammed) and maybe the forum could have a sticky list of known EDSS 9.9 or hospitalized or otherwise faint-hope cases who should be treated for CCSVI for humanitarian reasons.
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Re: Letter writing campaign for John Robinson

Postby eric593 » Sat Jun 19, 2010 2:39 pm

Cece wrote:*Dave McGuinty, the Premier of Ontario
Legislative Building
Queen's Park
Toronto ON M7A 1A1
(416) 325-3745
TTY/Teletypewriter: 1-800-387-5559

* Julia Munro, MPP
Queen's Park Office:
Room 204 North Wing
Legislative Building
Queen’s Park
Toronto, ON M7A 1A8
Phone: 416-325-3392
Fax: 416-325-3466
julia.munro@pc.ola.org

* Peter Van Loan, MP
Federal Government Office Constituency Office
York - Simcoe
Room 750
Confederation Block
House of Commons
Ottawa, Ontario
K1A 0A6 45
Telephone: 1-877-738-3748
E-mail: VanLoP0@parl.gc.ca Telephone: (905) 898-1600

* Minister of Health Canada postal mailing address:
The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

* Minister of Health Services British Columbia Kevin Falcon
postal address:
MINISTRY OF HEALTH SERVICES
1515 BLANSHARD STREET
VICTORIA BC V8W 3C8

* If mailing from the USA, you will need to use 2 US postage stamps to cover the 75 cent rate to Canada.



Premier of Ontario is Dalton McGuinty, not Dave.

Just curious why you chose those other politicians, like the Health Minister of British Columbia, but not the Ontario Health Critic of Ontario? Or why just a single MP and MPP, and not the others?

Is there a reason to this specifically directed writing campaign that doesn't include so many other important politicians?
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Postby mangio » Sat Jun 19, 2010 2:52 pm

could you add to the list please it would be of great help?
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Postby Cece » Sat Jun 19, 2010 2:54 pm

Thanks, Eric, I fixed the name to Dalton.

I try to target just five politicians in the first post, because it seems like a reasonable number to write five letters.

But I want to copy over much of the information that was posted in our last thread: more politicians, media outlets, etc.

I am right now looking up the Ontario Health Critic...again I do not think our letters should be limitted to the five politicians above, they are just a starting point:

France Gélinas, NDP Health Critic and Nickel Belt MPP
5085 Hwy/route 69N, Unit/unité 15, Hanmer (Ontario) P3P 1P7
Fax / Télécopieur: (705) 969-3538
Téléphone: 1-877-280-9990 or/ou (705) 969-3621
email message can be left at this site: http://francegelinas.ca/node/15

Also if there is a consensus on who we should target, let me know, I'll change it up!
Last edited by Cece on Sat Jun 19, 2010 3:24 pm, edited 1 time in total.
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Postby eric593 » Sat Jun 19, 2010 3:21 pm

These are the federal politicians who took part in the Take Note Debate on the 14th of June who were pro-immediate CCSVI treatment & testing in Canada or who had a loved one with MS, many many of them from Ontario, just copy & paste the email addy row to your "to" line in your email:

Duncan.K@parl.gc.ca; Hughes.C@parl.gc.ca; Maloway.J@parl.gc.ca; BrownPa@parl.gc.ca; Coady.S@parl.gc.ca; Foote.J@parl.gc.ca; Casson.R@parl.gc.ca; Allen.Ma@parl.gc.ca; Miller.L@parl.gc.ca; BelanM@parl.gc.ca; Braid.P@parl.gc.ca; Julian.P@parl.gc.ca

Kirsty Duncan
Carol Hughes
Jim Maloway
Patrick Brown
Siobhan Coady
Judy Foote
Rick Casson
Malcom Allen
Larry Miller
Mauril Belanger
Peter Baird
Peter Julian
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Postby Cece » Sat Jun 19, 2010 3:29 pm

Federal Minister of Health Critic: Megan Leslie
email: Leslie.M@parl.gc.ca

Ontario Health critic: France Gélinas
email: fgelinas-qp@ndp.on.ca

Barrie's MPP's:

1) M. Aileen Carroll (a strong proponent of CCSVI research)
email: acarroll.mpp@liberal.ola.org
M. Aileen Carroll, MPP (Barrie)
Room 361, Main Legislative Building, Queen's Park
Toronto, Ontario M7A 1A4

2) Patrick Brown (also strong proponent of CCSVI)
email: brownpa@parl.gc.ca
Brown, Patrick W.
Conservative Party of Canada
House of Commons
Ottawa, Ontario
K1A 0A6

List of other Ontario MPP's:

http://192.75.172.22/web/members/members_current.do?locale=en
"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 eric593 » Sat Jun 19, 2010 3:34 pm

Here is the Ontario Health Technical Advisory Committee that recommended to the Ontario government that they NOT permit this procedure:

OHTACinfo.moh@ontario.ca

Here is the link to the entire chain of Ontario provincial government email addresses that you can copy & paste to your email "to" line:

http://www.ontariotenants.ca/government/ontario-mpp.txt

Or, a link to the website with the email addresses of all 107 members:

http://www.ontariotenants.ca/government/mpp.phtml

A few key people in Ontario provincial politics:

Margaret Best, Ontario Minister of Health Promotion:

mbest.mpp.co@liberal.ola.org

Aileen Carroll, Ontario MPP in Barrie, a very outspoken proponent of CCSVI testing & treatment:

acarroll.mpp.co@liberal.ola.org

Premier McGuinty's email addy:

dmcguinty.mpp.co@liberal.ola.org

Ontario College of Physicians & Surgeons:

feedback@cpso.on.ca
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critics

Postby 1eye » Sat Jun 19, 2010 4:11 pm

Critic from NDP is Megan Leslie lesliem@parl.gc.ca


From: Jack Layton:
Sent: June-07-10 10:56 PM
To: Mike Sullivan
Subject: Re: Dr. Zamboni needs your help



We're supporting this effort too. It's true that the Liberals have taken particular leadership. We haven't tried to play politics and 'out muscle them.

Stay in touch with our Health critic, Megan Leslie.

Jack


From: Mike Sullivan <msullivan@cep.ca>
To: Layton, Jack - Personal
Sent: Mon Jun 07 19:36:05 2010
Subject: FW: Dr. Zamboni needs your help

More stuff on the liberation MS procedure. Liberals seem to be championing it.

Mike Sullivan, National Representative, CEP
"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 Cece » Sat Jun 19, 2010 5:40 pm

I thought this might be helpful, it's a list of letter writing tips from Amnesty International:

"Sending a written message - whether by email, in a letter or by fax - is one of the most effective ways for individuals to communicate their concerns to people responsible for violating human rights and to those in a position to influence their actions.

When you write in response to an Amnesty International appeal, you join tens of thousands of other people in a worldwide campaign. A steady stream of letters and emails does have an effect on governments. We know of many prisoners who have been released from torture or possible death.

A few simple rules for writing letters
1.Always be polite. Your aim is to address a situation of human rights abuse, not to relieve your own feelings. Governments do not respond to abusive letters.
2.Always write on the basis that the government concerned is open to reason and discussion.
3.It is important to show respect for a country's constitution and judicial procedures and an understanding of current difficulties. This will give you more scope to point out how the human rights situation could be improved.
4.Take care to follow Amnesty International's instructions on a case. For example, if a Newsletter asks you to appeal for medical treatment for a prisoner, make sure that you only ask for this and not for a speedy trial or release which may be inappropriate.
5.Never use political jargon. You should never give the impression that you are ideologically or politically opposed to the government in question. You will be more effective if you stress that your concern for human rights is not politically biased, but in keeping with the principles of international law.
6.It is good to give an indication of who and what you are. Some of our sample letters show how this is done. You prove your letter is genuine and illustrate to a government that people from all walks of life are following event in their country.
7.If you have a special interest or link with the country, it is good to mention this in your letter. For instance, you may have been there, or studied its history, or been a member of a local friendship association. You should indicate you would like to see a better image at the country abroad.
8.Be brief. Sometimes a simple, one-line letter is adequate. Please write no more than one page, as long letters are less likely to be read. Only in exceptional cases are long letters thought to be more effective and we will advise you of this.
9.In the case of Urgent Actions or Rapid Response emphasise how the addressee can intervene in the situation at another human being. Let them know they can make a difference."
http://www.amnesty.org.au/howyoucanhelp/comments/22328/
"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 Cece » Sun Jun 20, 2010 1:47 pm

Adding some media outlets from the other thread, originally posted by mamadawna:

ottsun.city@sunmedia.ca
torsun.citydesk@sunmedia.ca
newsdesk@lfpress.com
mark.hamm@sunmedia.ca
calnews@calgarysun.com
citydesk@edmsun.com
newsroom@intelligencer.ca
bcorcoran@chathamdailynews.ca
editor@thedailyobserver.ca
slfleming@northumberlandtoday.com
mccallum@stthomastimesjournal.com
rea@stthomastimesjournal.com
bmacleod@thesudburystar.com
editor.dailygraphic@shawcable.com
jmacmillan@globeandmail.com

If writing to the media, some possible talking points would be to inform them of the action taken in Barb Farrell's case (she will be flown in medical transport to the US to get treatment!), but that while this takes care of one worthy individual, it does not take care of the hundreds or thousands of other worthy individuals across Canada who have MS and want to know if they have CCSVI and would have to leave the country -- possibly even with a feeding tube, possibly even by medical transport -- if they are to get treated for this disease.

(http://www.youtube.com/watch?v=pD0YBRSyhSg for Patrick Farrell's thank-you video on youtube.) :)
"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 blossom » Sun Jun 20, 2010 6:44 pm

count me in.
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Postby Chrystal » Sun Jun 20, 2010 8:47 pm

Cece, thank you so much for all that you are doing. Sending letters and re-posting this appeal on other sites.

Take care and keep well.
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Postby belsadie » Mon Jun 21, 2010 6:46 am

and I though our system in the US was top heavy!
I've written to the first 5 mentioned in this post. and a soon as I get more stamps, I'll get the others out.

Great idea. We have to rally for those of us who are most vulnerable..
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Postby Cece » Mon Jun 21, 2010 9:18 am

belsadie wrote:We have to rally for those of us who are most vulnerable..

I know if I were in Barb's situation or John's situation, it would be nearly unbearable to be denied this.

Here is a quote, from the third Barrie examiner article on Barb Farrell:
A spokesperson for the provincial health ministry said there are programs for access to certain drugs on compassionate grounds, but not surgical procedures.
Andrew Morrison said the ball is in the federal government’s court now.
“Health Canada licensing … is required before we can take a better look at this,” he said.
Brown has been involved in exploring the activity around CCSVI and lobbying to make the procedure accessible.
The province, he says, has the power it needs.
The Ministry of Health of Ontario has full ability to allow this treatment,” he said. “It would be as simple as Premier McGuinty to ask the OTHAC (Ontario Health Technology Advisory Committee) to support the MS treatment for CCSVI in light of the 1,600 cases globally and not the smaller sample size in Ontario. He could order this to be available by OHIP. ”


Belsadie, Chrystal, blossom, eric593, 1eye and everyone else who has written letters this week or last week, thank you. I believe we made a difference for Barb Farrell, I believe we can make a difference for John Robinson and every MSer in Canada.
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