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Messages - ziggysego

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1
On TV?

Not on the BBC or Sky Sports. RTE's TV listing is useless. Only today's and tomorrow's listings.

2
General discussion / Re: My Way Access
« on: June 21, 2016, 04:35:11 PM »
FUND VIMIZIM FOR MORQUIO

TO: STORMONT HEALTH MINISTER MICHELLE O'NEILL MLA

We want funding for VIMIZIM to be made available for MPS Morquio. Vimizim in FDA and EMA approved. It Is being approved across the globe, in the US, Europe and Asia.

Why is this important?

The failure to approve the Highly Specialised Services and ultra-orphan drug appraisal process for children and adults with ultra-rare diseases is catastrophic for the 15 children and adults in Northern Ireland with Morquio Disease, MPSIVA. Following England, Scotland and Wales approval in recent months, we want Stormont to approve funding.

Morquio can affect people in various ways, with many not exceeding the height of 1 metre, severely affect their respiratory system, cause hearing and sight problems. Skeletal abnormalities can lead to progressive loss of mobility requiring use of powerchair, palliative pain relief, resulting in loss of energy and independence, extensive care packages and withdrawal from workforce

Morquio affects all systems of the body except the brain and is life limiting.

https://you.38degrees.org.uk/petitions/fund-vimzim-for-morquio

3
General discussion / Re: Game of Thrones - Spoilers
« on: June 21, 2016, 02:31:51 PM »
Fantastic episode and to think 3 fire breathing dragons wasn't even the highlight of the episode! The battle was brilliant, in acting, editing and sound. Ramsey the b**tard got what he deserved and I'm glad it was Sansa that dealt his final faith. I do feel as well, there was been a power shift between Jon and Sansa, as it was ultimately her that won the battle.

Also, Daenerys and Yara huh...

4
Good question. Surprised its not given its going to mess up the qualifier fixtures now for rounds 2 and 3 on the a side.

Ulster Council may have jumped the gun - I think it'll have to be this Sunday. If not, the losers would potentially be playing 5 weeks on the trot if they got to an All Ireland QF.

If they don't, then it will be at least 4 weeks before the league resumes in Tyrone.

5
Didn't something like this occur a few years ago and the BBC streamed it on their website?

6
GAA Discussion / Re: Laois v Armagh
« on: June 20, 2016, 10:22:48 AM »
The farce with a couple of substitutions yesterday epitomises where we at.Even simple things like making substitutions is a complex exercise.

Having said that I don't think even the current Armagh side would concede three goals against Cavan

Did they not concede 3 goals to that Cavan team in the league game Armagh were humiliated.

http://www.rte.ie/sport/gaa/2016/0305/772814-cavan-v-armagh/

7
General discussion / Re: My Way Access
« on: June 15, 2016, 03:45:33 PM »
The Irish News did a piece about my campaign to get Stormont to approve Vimizim for my disability Morquio on Monday's edition.

http://www.irishnews.com/news/2016/06/13/news/omagh-man-describes-how-new-drug-could-transform-his-life-558791/

8
General discussion / Re: Best Stand-up Comedian
« on: June 09, 2016, 11:26:51 PM »
#haventwashedsince lol. Not bad young man  :)

Oh... you read that  ;D

9
General discussion / Re: Best Stand-up Comedian
« on: June 09, 2016, 08:56:03 PM »

10
General discussion / Re: muppet's craption competition #155
« on: June 08, 2016, 03:58:14 PM »
visitors can't see pics , please register or login
 O'Shea, O'Shea, can you do the flamingo visitors can't see pics , please register or login

11
General discussion / Re: Where do people stop sayin "aye"
« on: June 07, 2016, 02:40:33 PM »
Aye, I know what you mean hi. Say it a lot here.

12
We need to break down these barriers and gates between the two communities
The higher you build your barriers, the taller I become.

The further you take my rights away, the faster I will run.

13
General discussion / Re: My Way Access
« on: May 26, 2016, 10:26:17 PM »
That's what I'm hoping Tony. With three SF MLAs in West Tyrone,  I'm hoping that'll fast track me meeting her to discuss it.  Plus WT Ulster Unionist Ross Hussey is raising it in Stormont during question time soon.

14
General discussion / Re: My Way Access
« on: May 26, 2016, 10:17:56 PM »
Over the years, I've shared many petitions for people to sign to put pressures to get funding made for Vimizim. It has shown to work in England, Scotland and Wales.

Now it's the turn for the north. Please sign and share so Stormont agree to this treatment for the disability I have - MPS Morquio.

https://you.38degrees.org.uk/petitions/fund-vimzim-for-morquio

15
General discussion / Re: Great Newspaper Headlines.
« on: May 20, 2016, 10:12:56 PM »
visitors can't see pics , please register or login


This has happened to me on more than one occasion.

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