My Way Access

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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/

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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