My Way Access

Started by ziggysego, May 11, 2011, 01:18:46 AM

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Lar Naparka

Quote from: Tony Baloney on May 11, 2011, 05:05:07 PM
Quote from: ziggysego on May 11, 2011, 03:09:35 PM
Thanks for all the kind words everyone. As you can see, it's still in it's infancy, but I hope it willl soon become known and spread more there. You may have seen in the papers recently talking about it ;)

The website is basic at the moment, as I'm funding it myself, but once people start joining and using the website, I hope to advertise and get the website developed further.

Again, I'm not plugging here to make money, it's something I believe passionately about. So if you know any disabled people, please let them know about my website and social media sites.
Tweet all those journos you follow and tell them to do a piece for the evening news. If they don't, accuse them of not being interested in the Equality Act...
I think that is an excellent idea.
Good luck with your initiative, Ziggy.
Nil Carborundum Illegitemi

ziggysego

Hi all

The open letter that I posted out to all the MPs in this part of the world today, asking them to apply whatever pressure they can on NICE and NHS England to approve Vimizim for MPS Morquio.

Apologises it's the letter is a little emotional in parts, but I had to be honest and truthful.

I ask each and everyone to please get behind this wider campaign. #Fight4Treatment

http://www.mywayaccess.com/blog/open-letter-to-get-vimizim-approved-for-mps-morquio/
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StephenC

Quote from: ziggysego on June 16, 2015, 03:57:29 PM
Hi all

The open letter that I posted out to all the MPs in this part of the world today, asking them to apply whatever pressure they can on NICE and NHS England to approve Vimizim for MPS Morquio.

Apologises it's the letter is a little emotional in parts, but I had to be honest and truthful.

I ask each and everyone to please get behind this wider campaign. #Fight4Treatment

http://www.mywayaccess.com/blog/open-letter-to-get-vimizim-approved-for-mps-morquio/

Good man Dermot. Keep fighting the good fight and I hope your own health can allow you to say yes a wee bit more! :)

Tony Baloney

Good man Zigger. Unfortunately the MLAs will be concentrating on serious matters like "letting them home" at Twaddell etc.

topcuppla

Quote from: Tony Baloney on June 16, 2015, 10:32:33 PM
Good man Zigger. Unfortunately the MLAs will be concentrating on serious matters like "letting them home" at Twaddell etc.

As sad as it is that is so true, the politicians in the occupied 6 are of no use to any member of the public from a social or economical viewpoint.

ziggysego

Thanks for all the kinds everyone. As you can imagine, it's a quite stressful and trying time for me. Don't even get to as many club and county football matches as I once was able to attend.

I'm hoping to get a few replies and maybe, at least one, take up the challenge and help me get Vimizim here.
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Hereiam

Ziggy the best you can do is try and get some TV time and embarrass these assholes into doing something for you.
As said before its a bad time of the year as most MLA'S will be thinking about the summer hols or going parading.
I have brothers who have a muscle wasting disease and its sad to see them waste away before you. Hope something happens for you.

ziggysego

Thanks Hereiam, bad timing but hopefully one or two will see sense and pick up on this.

Sorry to hear about your brothers, I didn't know of this before.
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Bingo

Good luck with it Ziggy, hope they listen and keep trying until they do.

Hereiam

#24
Something similar to your own case Ziggy.
What is wrong that these drugs cannot be issued, if they help in any way money shouldn't be an issue.
http://www.bbc.co.uk/news/uk-northern-ireland-foyle-west-33161237
This child will be lucky to see his teenage years

ziggysego

Breaks my heart to know there's treatment out there, but they won't funding it.

Very few of us with Morquio back in the 70s and 80s would be lucky to make it past their 20s. I had surgery on the base of my skulls in the early 90s, which helped in that respect.

http://www.boneandjoint.org.uk/highwire/filestream/15690/field_highwire_article_pdf/0/307.full-text.pdf

Apparently there's a picture of me floating about of me in one of these documents. I've yet to find it  :D :D
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Fiodoir Ard Mhacha

I dip in and out of this site and only saw the link to MyWayAccess today. I've passed it on to a pal with a disability. How's the routine going, btw?
"Something wrong with your eyes?....
Yes, they're sensitive to questions!"

ziggysego

Quote from: Fiodoir Ard Mhacha on June 18, 2015, 01:30:41 PM
I dip in and out of this site and only saw the link to MyWayAccess today. I've passed it on to a pal with a disability. How's the routine going, btw?

Hanging in there mate.
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ziggysego

A follow up open letter for David Cameron from a friend of mine's in Bath, England who also has Morquio.

She is 8-9 years older than me and was on the trial. You can clearly see from her letter what she was like before the treatment, the difference the treatment as made to her and what will happen when it stops tomorrow.

http://www.mywayaccess.com/blog/sarah-longs-open-letter-to-british-prime-minister-david-cameron/
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ziggysego

Hi all

Hope you don't mind me sharing another blog I wrote tonight.

"Somedays It's Hard Not To Get Angry..."

http://www.mywayaccess.com/blog/somedays-its-hard-not-to-get-angry/
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