My Way Access

[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/

Hi all

The campaign is nearly over and it looks like we've won. NICE announced today that they have recommended Vimizim on the NHS England. They will have a consultation now and assuming there are no issues, Vimizim will be available.

Now it's up to Stormon to get Vimizim here. With NHS England onboard, it's good.

http://www.mywayaccess.com/news/positive-nice-decision-for-vimizim-through-a-managed-access-agreement/

[omaghjoe]

Missed this Ziggy but seen the article on the Herald website there.

Good news and Congratulations hopefully it all helps

[ziggysego]

Thank you omaghjoe

Just have to see now if Simon Hamilton will approve it in Stormont. Big relief though, a stressful year.

[general_lee]

Good work ziggy.  Hopefully your man gives it the green light

[ziggysego]

I did a TEDx Talk back in November, if.anyone is interested in watching.

https://youtu.be/wZyGGz7XYpw

[Declan]

Fair play Ziggy

[Denn Forever]

As a true Tyrone supporter, I thought you'd at least wear a Red tie.

Well done.

[ziggysego]

Thank you all. I had fun doing it. As for treatment, still waiting for Stormont to approve it.

As for the purple tie. All part of my website brand colours

[Hardy]

Excellent work, Ziggy.

[ziggysego]

Thanks Hardy

[ballela-angel]

Ziggy  - That was awesome

[ziggysego]

Thank you Ballela Angel

[ziggysego]

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

[T Fearon]

Surely now you can move it with a Tyrone woman as Health Minister

[ziggysego]

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.