Re: Arthritis update - Canada

[Guest guest]

Very interesting June. I hope the efforts are successful. I¹ll be waiting

to hear how these meetings go. How is your foot? I hope it¹s healed.

Hugs,

a

> Hi a and and anyone else interested the following mentions some of

> the people I am going to be working with and gives you some info as to what we

> are doing here in Canada.I will be on the ethics review board(hoping the board

> will take us seriously.

>

> Hugs

> June

> Dear CAPA members & Associate CAPA members,

>

> To follow is a brief update of recent and upcoming arthritis advocacy

> activities:

>

> * Romanow Commission - The " Dialogue on Prescription Drugs " debate (Thursday

> September 5th 2002)

> Denis will be participating in this debate this Thursday evening and will be

> continuing to deliver the same basic messages he delivered on behalf of The

> Arthritis Society during his face-to-face presentation with the Commission:

> * The need for a more efficient, and thorough regulatory review process on

> medications

> * The need for international harmonization to reduce doubling/tripling of

> review efforts from Europe to the U.S. to Canada

> * The need for the Federal government to take ultimate responsibility of the

> regulatory process

> * The need for patients' to be at the table (post market surveillance,

> consumer representation on ethics review boards the need for " transparency "

> within the system, ie, what's being reviewed and where things stand with

> products

>

> For further information including a media advisory please click on the

> following link: " Dialogue on Prescription Drugs " , a debate co-hosted by

> Romanow Commission. http://www.newswire.ca/releases/August2002/29/c6896.html>

>

>

> * CRA Meeting with Geneviève Tremblay, Special Assistant, to Anne McClellan

> (Sept. 6th )

> * Members of the CRA executive will meet with Anne McLellan's (Federal Health

> Minister) special assistant Geneviève Tremblay to present an integrated

> approach model to rheumatology care.

> * The CRA has invited a CAPA member to attend this meeting in Ottawa.

> Wilhem will be representing CAPA

>

> * Canadian Arthritis Network Annual Meeting, Calgary Alberta (Sept. 26th- 29th

> )

> * To review agenda, please click on

> http://www.arthritisnetwork.ca/Conferences/2002/conf2002.asp

>

> * Please click on the following link to read a news release launching

> Arthritis Month and The Arthritis Society's " Arthritis in the Workplace "

> campaign. To find out more on the program, log on to

> www.arthritis.ca/workplace or www.arthrite.ca/milieudetravail

>

> * Bone & Joint Decade Declaration

> * The Federal Minister of Health, Anne McLellan endorsed the declaration of

> 2000-2010 as Bone & Joint Decade, and hopes that, by working in partnership

> nationally and internationally, more progress can be made toward the reduction

> of bone and joint disorders in Canada and the rest of the world.

> * The Arthritis Society is working with the Minister's Office with regards to

> a formal announcement

>

> * Arthritis News Magazine Highlights (Fall 2002)

> * See page 6 for article: Canada takes the OA initiative featuring

> Lorenzetti from Alberta, (CAPA member and Canadian Arthritis Network -

> Consumer Advisory Council Member) highlighting the spring OA consensus

> conference

> * See page 9 for article: Informed and Ready featuring Anne Dooley from

> Saskatchewan (CAPA Steering Committee Member) which highlights the Cochrane

> Collaboration and arthritis research information on-line

> * See page 17 Preparing for Pregnancy featuring Dr. Dianne Mosher of Nova

> Scotia and a Collier of Newfoundland (CAPA mem

>

>

>

[Guest guest]

Hi, June! I read your upcoming arthritis agenda with great interest. I'm

so happy you and your friends are working hard for such a good cause.

I'm sure that if you are on the ethics review board that they will have

no choice but to take you seriously. I look forward to hearing about

what progress you make.

Although I haven't written about it, I did read your story about

earlier and have been thinking about her a lot (easy to remember her

name because she shares it with my oldest). I'm so happy that she has

been discharged. I hope the remaining treatments go very well for her.

Is she in much pain? I hope not. Both my sister and a good friend from

college were burned as young girls with boiling water and at least the

treatments today are light years better.

Now, that foot of yours! a and I have queried you repeatedly to no

avail until now. We are very worried. How many of your doctors are

looking into this? Are you still on Enbrel right now? Maybe you could

use this as an excuse to see that handsome Dr. Keystone again. Please be

careful and let us know what is going on.

With love and concern,

[ ] Arthritis update - Canada

> Hi a I will keep you up to date on the progress we make. All these

issues are worth fighting for,if not for us,for all the other RA

patients entering new drug studies.

>

> My foot is a huge problem at the moment. I will know next Tuesday if I

need a skin graft where the ulcer is.Another problem developed a week

ago where my same toe keeps getting huge water blisters for no reason. I

have bathed my foot twice a day for weeks now in salt water,wear my

Birkenstocks all the time so have no idea nor does the doctor as to why

these blisters keep coming. Now,of course,the whole toe is infected so I

am back on antibiotics again.

>

> My niece has finally been discharged from Childrens Hospital in

Washington and will have the rest of the treatment here at Sick Kids in

Toronto. This is something new and someone is going to train the staff

in the burn unit how to do it. It is called transite skin and costs

$1000 per sheet but it shortens the recovery time by about 75% or more.

received such wonderful care at this hospital,she and her Dad

will long remember the many kind people that helped in so many different

ways. Several of the nurses nick named her the little Canadian and

presented her with a very pretty cotton nightie and matching

housecoat.Lots of thank you letters are being sent to our US friends by

family members here toshow our appreciation.

>

> Hugs

> June

[Guest guest]

June,

I admire you for all you do to help fellow RA sufferers. I know you¹ll do

your best to see that these issues become a reality.

I was afraid that your foot wasn¹t healing. I hope the doctor can figure

something out to get this under control. I don¹t think I have to tell you

how serious this can become. You¹re in my prayers June.

I¹m so happy that your niece has been discharged. It¹s great to hear how

well she was treated. This is such a traumatic injury for a child and I¹m

sure the care she got helped to ease the pain.

I¹ve read about these skin procedures and think it¹s fantastic for burn

victims.

May both of you heal quickly.

Hugs,

a

> Hi a I will keep you up to date on the progress we make. All these issues

> are worth fighting for,if not for us,for all the other RA patients entering

> new drug studies.

>

> My foot is a huge problem at the moment. I will know next Tuesday if I need a

> skin graft where the ulcer is.Another problem developed a week ago where my

> same toe keeps getting huge water blisters for no reason. I have bathed my

> foot twice a day for weeks now in salt water,wear my Birkenstocks all the time

> so have no idea nor does the doctor as to why these blisters keep coming.

> Now,of course,the whole toe is infected so I am back on antibiotics again.

>

> My niece has finally been discharged from Childrens Hospital in Washington and

> will have the rest of the treatment here at Sick Kids in Toronto. This is

> something new and someone is going to train the staff in the burn unit how to

> do it. It is called transite skin and costs $1000 per sheet but it shortens

> the recovery time by about 75% or more. received such wonderful care

> at this hospital,she and her Dad will long remember the many kind people that

> helped in so many different ways. Several of the nurses nick named her the

> little Canadian and presented her with a very pretty cotton nightie and

> matching housecoat.Lots of thank you letters are being sent to our US friends

> by family members here toshow our appreciation.

>

> Hugs

> June

>

>

>