Hi All :wave:
I am after a little help with something not railway related
But I have a very Dear Friend that suffers from Narcolepsy and Cataplexy
There is a Drug available that could help her with this condition
But her local NHS Have refused her this Medication 7 times now
all because of the cost implications
so if you can take a little time to sign The e-petition below I would greatly appreciate it :thumbsup:
http://www.narcolepsy.org.uk/news/please-sign-petition (http://www.narcolepsy.org.uk/news/please-sign-petition)
Cheers
Dave :thumbsup:
JUST SIGNED !
Hi Dave
Me too
George
All done :thumbsup:
:thumbsup: Done here also.
Roger
All done
Signed :thumbsup:
Good luck with the petition, Dave.
Thank you all for your support
It means a lot to me
And I know it will mean a lot to Jacky also :thumbsup:
They won't even fund a 3 month trial
which if it did not work the drug company would refund the NHS :(
Once again :thankyousign:
:beers:
Dave :thumbsup:
Please keep us posted with the number of folks who've signed up. Hopefully we'll get Jacky what she needs.
I Will keep you all up to date with the progress
Here is a letter that her 8yr old son sent to the government
It isn't an easy read
(http://i1225.photobucket.com/albums/ee398/davieb68/Jacks%20letter_zpsn4dtgmrx.jpg) (http://s1225.photobucket.com/user/davieb68/media/Jacks%20letter_zpsn4dtgmrx.jpg.html)
Cheers
Dave :thumbsup:
Done. Good luck with it
Signed on the dotted line, as NPN wrote please keep us upto date with ant developments.
Regards to you both.
Ray
Signed
Signed, 3 members of SWMBO's direct family have cataplexy, not nice at all.
signed!
Signed
Signed.
Best wishes to your friend.
Brian.
i have signed
I've signed and I hope things get better.
However,after signing I was taken to the Change.org site.Last time this happened it caused me to keep getting spam wanting petitions signing.
Unless I'm mistaken,they want a subscription to pay them to send petition requests out,didn't see any mention of any financial help for the person the petition is about.
Allan
Just Signed. But like Bikeracer I was taken to another site this also happened when someone else asked me to sign about a dog being put down for no reason. I never read anything about help for the person you mention in the post.
Bob
Just signed. Good luck. Ron
Signed.
Best wishes
I will look at this group more. I'm almost 36and have had just awful sleep patterns ever since I was a baby. I'll have a look at their website.
Hi all :wave:
Just thought I would take time to thank you all for your comments
and here is a little insight into what Jacky is going through
http://www.southportvisiter.co.uk/news/skelmersdale-mum-vows-continue-fight-8669045 (http://www.southportvisiter.co.uk/news/skelmersdale-mum-vows-continue-fight-8669045)
Cheers
Dave :thumbsup:
Done, Shared and Distributed!
Not in the UK but so signed on behalf of my Mum.
Hi all :wave:
Just a little news update for you
things ar coming along nicely with the e-petition :thumbsup:
But this post is to let you know that my friend Jacky will be appearing
on the ITV program "This Morning" programme tomorrow morning 2nd March
I just hope it goes well for her :uneasy: :worried:
Cheers
Dave :thumbsup:
Just a quick update on the petition
It reached the 5000 mark last night :claphappy: :claphappy:
Thanks once again to all that signed it
dave :thumbsup:
Sorry, i missed this thread. I was 5079. Good luck.
Hi all
Just a quick update on the petition
It is now up to 6385 signatures and slowly rising
This short video was from the TV this afternoon
and it shows how Jacky spends her days at the moment
https://www.youtube.com/watch?v=d6APMlT1sQc (https://www.youtube.com/watch?v=d6APMlT1sQc)
It brings tears to my eyes when I watch it
Cheers for looking
Dave :thumbsup:
Sorry Dave could not sign the web page kept crashing will try tomorrow
Graham
Web page to sign is updating the server.Will try again tomorrow,Dave.
I find it quite disgusting that people are refused treatments that could save or improve their lives because of cost.
Especially when you hear things like large companies being allowed to get away with paying billions in taxes,money which would help fund these life saving drugs for so many people.
Saw the programme and wept.
Jacky has no life due to her illnesses and yet is one of the bubbliest people you could ever meet.
Signed :thumbsup:
Quote from: davieb on February 23, 2016, 07:19:47 PM
This short video was from the TV this afternoon
and it shows how Jacky spends her days at the moment
http://www.youtube.com/watch?v=d6APMlT1sQc (http://www.youtube.com/watch?v=d6APMlT1sQc)
It brings tears to my eyes when I watch it
Cheers for looking
Dave :thumbsup:
:hellosign:
Have signed petition, but get "This video is private" message when I click the button.
Looks like ITV have changed their settings :censored:
Dave :(
Site back up and signed,Dave...... :thumbsup:
The footage of Jacky is now back up
https://www.youtube.com/watch?v=d6APMlT1sQc&index=17&list=PLF3_mVMz-kfoXX9qZLiyMFePrM_3dpdYL (https://www.youtube.com/watch?v=d6APMlT1sQc&index=17&list=PLF3_mVMz-kfoXX9qZLiyMFePrM_3dpdYL)
Unfortunately Jacky found out Yesterday that yet again she has been refused funding for the medication she needs :'(
Thanks for looking
Dave :thumbsup:
Hi All :wave:
:claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy: :claphappy:
http://www.narcolepsy.org.uk/blog/success-jacky (http://www.narcolepsy.org.uk/blog/success-jacky)
I am so happy to let you all know that Jacky has got the funding she needed for the trial
After 5 years of trying to get funding I just hope it works :worried:
Thanks for looking
Dave :thumbsup:
Huzzah!!
Fantastic news for Jacky and about time someone at last has seen sense and allowed the trial to go ahead.
Great news :thumbsup: