My Way Access

[ziggysego]

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/

[ziggysego]

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

[dec]

An Article about Dermot from the Belfast Telegraph yesterday

https://www.belfasttelegraph.co.uk/news/politics/activist-uncovers-major-problem-for-people-with-disabilities-across-ni-its-next-to-impossible/a179647078.html

https://www.pressreader.com/ireland/belfast-telegraph/20250430/281548001760437


A leading disability campaigner has hit out at how "non-existent" accessible taxi services for wheelchair users in Northern Ireland make them feel like "second-class citizens".
Dermot Devlin is campaigning for increased access for wheelchair users and severely disabled people across the region.
With the majority of disability-friendly taxis switching off their meters for the day at 6pm, he argues that there is a perception that "disabled people don't have a social life".
The Omagh-based activist conducted an almost two-year investigation into the issue, and found the trend after interviewing wheelchair users across Northern Ireland.
Mr Devlin started his probe after his go-to taxi service of nearly 20 years retired — leaving the Co Tyrone man with few alternatives.
"For the last probably 20 years, I've been using a particular taxi company for wheelchair transport," Mr Devlin said.
"But they have retired and I find it quite difficult to get new taxis. Any time I went to a new town, whether it was Cooktown, whether it was Belfast, or wherever it would be, I find it next to impossible to get taxis.
"The more disabled people that I've been speaking to — over the course of the last 18 months to two years — I found that this was a major problem for disabled people, particularly those who are wheelchair users."
Supported by the Social Change Initiative, Mr Devlin conducted interviews and found a "common thread" hindering wheelchair users in both rural and urban areas.
He has since met with Infrastructure Minister Liz Kimmins and senior members of major taxi firms here to push for a reform of the 2008 Taxis Act to address the struggles of the wheelchair-using community.
A review of the Taxis Act is expected to take place next year and Mr Devlin hopes to keep up the pressure until then in his push for change.
Mr Devlin recalled a time he was staying in a hotel in Belfast and had to travel for a concert on the other side of the city.
"They couldn't provide me a taxi back after the concert," he said. "So it meant I had to walk the whole way across Belfast at night. For someone that's not familiar with the city it doesn't feel too safe."
The activist will kickstart his campaign by launching his investigation's findings in tandem with social affairs publication View Digital on May 13 at Queen's University, Belfast.
Mr Devlin said: "Particularly with the Taxis Act for Northern Ireland in 2008, it just doesn't seem to be living up to the potential that they should have been doing. You know, what changes can be made and what's coming forward.
"One common thing I can say, and that's an experience that everybody experienced, is that after five o'clock or six o'clock, it is downright impossible to get a wheelchair-friendly taxi because none seem to be operating after that time. It makes us feel like the perception in the non-disabled world is that disabled people don't have a social life."

[quit yo jibbajabba]

Why did Ziggy leave us

[Tony Baloney]

Why did Ziggy leave us

Too busy with all his spinning plates I'd say. He's out there making a difference instead of picking his top 3 Ocean Colour Scene songs 

[Puckoon]

Why did Ziggy leave us

Too busy with all his spinning plates I'd say. He's out there making a difference instead of picking his top 3 Ocean Colour Scene songs 

HEY!!! WTF BALONEY.

[quit yo jibbajabba]

Why did Ziggy leave us

Too busy with all his spinning plates I'd say. He's out there making a difference instead of picking his top 3 Ocean Colour Scene songs 

He went there
We warned him not to go there
But he went there
You're on your own now mate

[laoislad]

Why did Ziggy leave us

He had to change his name here because he harassed people online on other forums.
Serious hate-monger.

Oh wait no, that's me 😂

[gallsman]

Why did Ziggy leave us

Too busy with all his spinning plates I'd say. He's out there making a difference instead of picking his top 3 Ocean Colour Scene songs 

Absolute zing.

Why did Ziggy leave us

He had to change his name here because he harassed people online on other forums.
Serious hate-monger.

Oh wait no, that's me 😂

What was this? You get doxxed?