Letter writing campaign for Barb Farrell - VICTORY

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

Postby foreignlesion » Mon Jun 14, 2010 12:15 pm

1 reply:

Dear Friends,

The time has come for us to move vigorously to increase pressure on the federal government to play a leading role in helping achieve immediate access to CCSVI treatment.

In our May 25 letter sent to the Minister of Health Leona Aglukkaq, my colleague, NDP Health Critic Megan Leslie and myself made the case for a comprehensive approach to address the MS crisis. http://peterjulian.ndp.ca/node/997 This includes allocating fast-track funding for evidence-based research in Canada, promoting and facilitating greater and broader participation from Canadians living with MS in pilot testing, and helping facilitate immediate pre-screening imaging services to those afflicted with MS.

The main objective is to have the federal and provincial governments facilitate the application of Dr. Zamboni’s remarkable CCSVI discovery which has proven to treat MS symptoms and to restore the health of many MS sufferers.

On my website, you will also find a petition calling upon the federal government to play a key role in encouraging the swift adoption of this safe, painless, and effective procedure in Canada. Please help us circulate this petition to help gain momentum and to put pressure on the federal government to act swiftly and decisively. Get others to sign it too-Please return the completed original petition (postage free) to Peter Julian's Parliamentary Office in Ottawa:
Peter Julian MP for Burnaby-New Westminster
Room 178, Confederation Building, House of Commons
Ottawa, Ontario K1A 0A6
Please make contact with my office if you have any questions juliap@parl.gc.ca
By working together we will help make a difference to ensure equal access to CCSVI treatment for all Canadians living with MS.
Sincerely,

Peter Julian, MP
Burnaby-New Westminster



Chers amies (s),

Le temps est venu pour nous d’exercer des pressions vigoureuses sur le gouvernement fédéral pour qu’il joue un rôle de premier plan dans l’offre d’un accès immédiat au traitement de l’IVCC.

Dans notre lettre du 25 mai adressée à la ministre de la Santé, Leona Aglukkaq, ma collègue et porte-parole du NPD pour la santé, Megan Leslie, et moi-même avons plaidé en faveur d’une stratégie globale pour résoudre la crise de la SP. http://peterjulian.ndp.ca/node/997 Cela comprend une procédure accélérée pour le financement de la recherche fondée sur l’expérience clinique et réalisée au Canada, la promotion d’une participation plus grande et plus large de Canadiens souffrant de SP à des tests cliniques et la facilitation de l’offre immédiate de services d’imagerie de dépistage aux personnes souffrant de la SP.

L’objectif principal est que les gouvernements fédéral et provinciaux facilitent l’application de la remarquable découverte du Dr Zamboni, qui, preuves à l’appui, permet le traitement des symptômes de la SP, voire de guérir nombre de personnes atteintes de cette maladie.

Dans mon site web, vous trouverez également une pétition demandant au gouvernement fédéral de jouer un rôle de premier plan dans les efforts visant l’adoption rapide de ce traitement sûr, sans douleur et efficace au Canada. Nous vous prions de nous aider à faire circuler cette pétition pour recueillir d’autres appuis et exercer des pressions sur le gouvernement fédéral pour qu’il agisse rapidement et décisivement. Signez la pétition-s.v.p. partager la pétition avec d’autres personnes-Veuillez retourner la pétition originale signée (port payé) au Bureau Parlementaire de Peter Julian à Ottawa :

Peter Julian, député de Burnaby—New Westminster
Pièce 178, édifice de la Confédération, Chambre des communes
Ottawa (Ontario) K1A 0A6

Veuillez contacter mon bureau juliap@parl.gc.ca si vous avez des questions.

En conjuguant nos efforts, nous assurerons à tous les Canadiens souffrant de la SP un accès du traitement de l’IVCC.

Veuillez agréer, mes amies (s), l’expression de mes sentiments les meilleurs.

Peter Julian, député
Burnaby-New Westminster
User avatar
foreignlesion
Family Member
 
Posts: 84
Joined: Sun Jul 12, 2009 3:00 pm
Location: Regina, Saskatchewan

Advertisement

Postby Cece » Mon Jun 14, 2010 2:09 pm

[url]http://peterjulian.ndp.ca/sites/default/files/Pétition_Accès%20au%20traitement%20de%20l'IVCCpour%20ceux%20et%20celles%20atteints%20de%20SP.FRA_.pdf[/url]

Here is a direct link to this petition. It has room for 25 signatures. This guy is on our side!!!
"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
Cece
Family Elder
 
Posts: 8958
Joined: Mon Jan 04, 2010 4:00 pm

Deb Mathews did not return call

Postby eveable » Mon Jun 14, 2010 3:56 pm

I notice I did not receive a return call from Deb Mathews about the Barb Farrell sisuation. Not surprising, I doubt if she gets her own voice mail. But it does add another mark against her.
If one is in politics you have to answer your taxpayers questions.
User avatar
eveable
Family Member
 
Posts: 52
Joined: Mon Apr 26, 2010 3:00 pm

Postby nico » Mon Jun 14, 2010 6:14 pm

greetings,

l'm an aussie who has been treated twice for CCSVI, on March 12 and as recently as last week, 9 June. lt has made an enormous difference, yep, l'm still in a wheelchair etc, but if at all possible, please add my pleas to any petition, lobbying, etc, going on for Barb. lt infuriates me that neurologists etc, are using scare tactics and the like to cruelly deny Barb the help she so desperately needs. And by the way, l'm also SPMS and CCSVI treatment IS working.

cheers, Nicoletta
User avatar
nico
Family Member
 
Posts: 69
Joined: Wed Feb 10, 2010 4:00 pm

Postby pegmegrund » Mon Jun 14, 2010 6:33 pm

I think that the address for Janice Skot (President and CEO of RVH) is incorrect. My mail was returned, and I noticed on some of the Facebook pages that folks are sending to this instead:

SkotJ@rvh.on.ca

If your email was returned because the address ended in rvh.com, please try again to the above address.

Thanks!
User avatar
pegmegrund
Family Elder
 
Posts: 110
Joined: Sat Oct 31, 2009 4:00 pm

Re: Deb Mathews did not return call

Postby Cece » Mon Jun 14, 2010 7:37 pm

eveable wrote:I notice I did not receive a return call from Deb Mathews about the Barb Farrell sisuation.

Perhaps that's cause for a follow-up email or letter? I thought your phone call was bold and assertive and straight-to-the-point!!

I've corrected the email for Janice Skot on the first page.

If you've already written your five letters, then consider sending the text of the first post to five friends...or posting it on your facebook wall...or anything else you can think of to spread this out there.
"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
Cece
Family Elder
 
Posts: 8958
Joined: Mon Jan 04, 2010 4:00 pm

Deb Mathews

Postby eveable » Tue Jun 15, 2010 9:23 am

I emailed Deb Mathews again and this got a reply.

Dear Eve,



Thanks for emailing Deb.



As this issue falls under Deb's responsibility in her role as Minister of Health and Long-Term Care, I've forwarded your email to her ministry office at Queen's Park.



If you would like to follow-up on this, please contact the ministry office directly at: ccu.moh@ontario.ca or you can call the Minister's office at 416-327-4300.



Sincerely,



Krys

Constituency Assistant

Deb Matthews, MPP

London North Centre

242 Piccadilly Street

London ON N6A 1S4

Phone: (519) 432-7339

Fax: (519) 432-0613
User avatar
eveable
Family Member
 
Posts: 52
Joined: Mon Apr 26, 2010 3:00 pm

Postby Deener62 » Tue Jun 15, 2010 11:07 am

Sent letter to Hospital and cc'd about a dozen Saskatchewan newspapers on Sunday evening. I've not had any reply but sure didn't expect one from the hospital! Warned them of the growing campaign and support for Barb - let's pray this explodes on them... in her favour.
User avatar
Deener62
Newbie
 
Posts: 1
Joined: Mon Jun 14, 2010 3:00 pm

Postby cheerleader » Tue Jun 15, 2010 4:36 pm

I'm wondering if anyone has heard anything...especially after the call for compassionate care during the debates yesterday. Any news??? Please let us know. Thinking of Barb today....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4940
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Cece » Tue Jun 15, 2010 4:58 pm

No news here. If Mr. Farrell posts on the facebook page again, that is probably where we'd hear any update. It does sound like a LOT of letters have been sent.

Meanwhile, here is a list of email addresses for the 28 members who attended yesterday's debate. Should we thank them for participating and remind them of the urgency of this?

Kirsty Duncan Duncan.K@parl.gc.ca

Carol Hughes Hughes.C@parl.gc.ca wow

Tim Uppal Uppal.T@parl.gc.ca

Ron Cannan Cannan.R@parl.gc.ca

Ralph Goodale Goodale.R@parl.gc.ca

Kelly Block Block.K@parl.gc.ca

Luc Malo Malo.L@parl.gc.ca

Paul Szabo Szabo.P@parl.gc.ca

Patricia Davidson Davidson.P@parl.gc.ca

Cathy McLeod McLeod.C@parl.gc.ca

Jim Maloway Maloway.J@parl.gc.ca ROCKS!

Patrick Brown BrownPa@parl.gc.ca

Siobhan Coady Coady.S@parl.gc.ca she was awesome!

Judy Foote Foote.J@parl.gc.ca Amazing

Harold Albrecht Albrecht.H@parl.gc.ca

Rick Casson Casson.R@parl.gc.ca daughter with MS

Cheryl Gallant Gallant.C@parl.gc.ca

Malcom Allen Allen.Ma@parl.gc.ca his fathers story heartbreaking.

Daniel Petit Petit.D@parl.gc.ca

Larry Miller Miller.L@parl.gc.ca

Mauril Belanger BelanM@parl.gc.ca "angio nothing new"

Lynne Yelich Yelich.L@parl.gc.ca

Peter Baird Braid.P@parl.gc.ca wife Annette with MS

James Bezan Bezan.J@parl.gc.ca

Peter Julian Julian.P@parl.gc.ca him and Kirsty seperated at birth?

(This comes from CCSVI in Brantford, ON notes on facebook)
"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
Cece
Family Elder
 
Posts: 8958
Joined: Mon Jan 04, 2010 4:00 pm

Postby HappyPoet » Tue Jun 15, 2010 5:23 pm

Cece wrote:Meanwhile, here is a list of email addresses for the 28 members who attended yesterday's debate. Should we thank them for participating and remind them of the urgency of this?

Cece,

A "thank you" is a wonderful, classy idea!

If I could help again, I'd volunteer, but I'm in a pseudo-exacerbation right now because of a head/chest cold. I'm sure you'll receive lots of offers to help!

A good evening to you,
~Pam
User avatar
HappyPoet
Family Elder
 
Posts: 1399
Joined: Thu Jul 09, 2009 3:00 pm

Postby Cece » Wed Jun 16, 2010 1:14 pm

...
Last edited by Cece on Wed Jun 16, 2010 5:46 pm, edited 1 time in total.
"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
Cece
Family Elder
 
Posts: 8958
Joined: Mon Jan 04, 2010 4:00 pm

Patrick Farrell

Postby eveable » Wed Jun 16, 2010 4:56 pm

Patrick just posted this:

Patrick Farrell LEAVE RVH OUT OF THIS.
It is our wish that you stop bullying the hospital. They are merley the messenger and they are the ones responsable for her care, If you truly care for Barb realize that if I thought they weren't doing an excellent job, she wouldn't be there. I would pack her up and driver here elsewhere.They care......, they are supporting not just her, but John and I.

as well as:

"The Medical advisory board have turned down Barb for the vascular angioplasty. We are devastated. Barb even speak. We don't know what to do."
User avatar
eveable
Family Member
 
Posts: 52
Joined: Mon Apr 26, 2010 3:00 pm

Postby Cece » Wed Jun 16, 2010 5:25 pm

I've updated the first page to put the campaign on hold:

NO MORE LETTERS FOR NOW!! PATRICK FERRELL IS ASKING THAT WE STOP. THE HOSPITAL HAS BEEN BOMBARDED. WE ARE WAITING FOR HIS ADVICE ON WHAT TO DO. PLEASE CONTINUE TO HOLD HIS FAMILY IN YOUR THOUGHTS AND PRAYERS.
"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
Cece
Family Elder
 
Posts: 8958
Joined: Mon Jan 04, 2010 4:00 pm

Postby blossom » Wed Jun 16, 2010 6:25 pm

what a heartbreaking situation. i hope whoever is holding this up would drag out a dictionary and read the meaning of "COMPASSION." seems like a lot of leaders and highly educated people have not learned some of the most important things in life. it is like i feel their pain and anxiety-it hurts me to the bone. thoughts and prayers for sure.
User avatar
blossom
Family Elder
 
Posts: 1328
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users