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Post by Deanne Jenkyns on May 29, 2007 17:04:23 GMT 1
Hi all, Today I was contacted by Ann memeber name Nannio. I have copy and pasted the email with her permission. As you know I will be attending the Appeal hearing on the 6th June At NICE. We are now going to try our best to arrange the walk on the day of the hearing. Anyone wanting to join will be great!
Hi Deanne
I have just registered on your message board as 'nannio'. Some one in our family also needs Tarceva and it wasn't until we learned this that we even knew about the drug treating many cancer patients. To heighten the awareness and add weight to the e-petition already in force we (family & friends) wish to walk from NICE's London Office to 10 Downing Street.
The Tarceva walk is a mere gesture but wearing t-shirts with apt slogans might draw the attention of many thus pressurising those involved in an early approval of the drug. We have yet to set a date but if you know of other walks or if you have an army of supporters willing to join us - maybe number ten will not wait until February 2008, which I feel is far too late for many.
Your thoughts and comments are very much appreciated and all of us have read your plight. :-)
Kindest regards
Ann Blackery
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Post by nannio on May 30, 2007 6:30:59 GMT 1
Hi All
I think now it would be enough to pace outside the London office of NICE whilst the hearing is in progress and also for it's duration. I believe you said Deanne on the phone that the hearing starts at 1.00pm until 5.00pm.
If anyone can pace with us - it will heighten public awareness. Please let us know if you can make it to Holborn in London on the 6th June. It is every cancer patient's right to have Tarceva made available to them - unconditionally!
Annie
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Post by norfolkbirdie on May 30, 2007 10:40:12 GMT 1
Hi Dave and I will be there!!
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Post by Deanne Jenkyns on May 30, 2007 13:04:03 GMT 1
Hi Ross, Fantastic! See you both then Will be great to meet you and Dave! Deanne x
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Post by dtay on May 30, 2007 18:28:00 GMT 1
Will be thinking of you all xx
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Post by nannio on May 30, 2007 23:10:37 GMT 1
Look forward to meeting you all. :-)
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Post by nannio on May 31, 2007 10:17:22 GMT 1
Deanne - I'm at work and do not have your phone number to hand. Please phone Carol on 01268 565900 to order T-shirts - as yet she is to advise me of price but I told her to expect your call. She will make sure T-shirts ready in time for Wednesday. She will take payments over phone.
You can call me at work - my direct line is 01268 568266 - cheers Annie xx
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Post by nannio on May 31, 2007 10:19:53 GMT 1
oops! meant to say I have e-mailed my local radio station BBC Essex with our plight tothe Time to Talk programme. See if you can listen live on line. It's the Dave Monk show on BBC Essex.
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Post by phillipa on May 31, 2007 12:23:15 GMT 1
This is the day Kent is having cryotherapy on the tumour, so we wont be able to make it to London
Phillipa
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Post by Deanne Jenkyns on May 31, 2007 15:38:54 GMT 1
Hiya Phillipa, We will be thinking of Kent on the Day! Hope all goes well.
Deanne xxx
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Post by Deanne Jenkyns on May 31, 2007 15:43:27 GMT 1
Annie, Just to let you know I called Carol and ordered 4 T shirts. She is going to deliver them to you and we will just get them off you on the day. Thanks so much!
Deanne x
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Post by nannio on Jun 1, 2007 21:45:06 GMT 1
Hi Deanne
I spoke to Carol today to order another one and i'll pick up all the T-shirts on Tuesday after work. I have had a couple of folk show interest and my sister in law is traveling with me to London.
Hi Phillipa, I too will be thinking of you and Kent on Wednesday - I know I don't know any of you but it doesn't stop me thinking and sending positive thoughts out to you both - I hope all goes well.
Annie xx
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Post by Deanne Jenkyns on Jun 1, 2007 22:06:03 GMT 1
Fantastic Annie! Looking forward to meeting everyone!
Take care Deanne x
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Post by Deanne Jenkyns on Jun 4, 2007 15:43:04 GMT 1
Hi All, Have made the local police aware of our presence. He asked me to put all the details in a email which I have done. Just had to assure them that we would not cause an obstruction, Told them we will be on our best behaviour ;D And gave them Jimmys cell number.
See you all soon Deanne x
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Post by Deanne Jenkyns on Jun 5, 2007 11:28:04 GMT 1
Sky News! Contacted me this am they have heard about support rally and want to send a camera down there! Any more bodies willing to support will be fab!
Deanne x
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Post by dtay on Jun 5, 2007 20:58:08 GMT 1
i wish I could be with you all but I cant leave my kids - I will be there in spirit tho !! x
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Post by nannio on Jun 6, 2007 6:06:20 GMT 1
We are there for those who can't be dtay - being there in spirit is just as excellent - only make sure you have sky news on ;-)
A quote from an acquaintance of mine;
"It takes just one to make a crowd One with conviction to shout out loud"
Please then dtay, Phillipa & Kent (good luck for today) - shout for us from wherever you are!
Positive thoughts and love to everyone - today MUST make a difference to the thousands
Annie xx
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