Here we all are, at the end of another year, wondering where it has disappeared to. We usually take this time to reflect on the year that has gone back and see what we can do and learn to bring forward with us to the incoming year. I shall be no different.
2017 is a year, where my campaigning and advocacy work took a little back seat. Having previously worked tiredly and non-stop for over two years to get Vimizim approved, I needed some “me” time and to relax a little. I didn’t stop completely, but it wasn’t my driving focus in 2017. Boy, did I need it!
I have been on Vimizim non-stop now over a year and I certainly can feel the benefits. I am a new man, with a brighter future and I’ve the energy and the drive to move forward. I spoke a little about my year on Vimizim in a previous blog, so I’ll not repeat my here. You can read it here. One Year Later – My Vimizim Story.
I still dipped my toes into some advocacy work over the year. Two of the high profile work was being asked to speak on Stephen Nolan’s BBC Radio Ulster Show about people abusing disability parking spaces and parking on public footpaths, blocking the right of way.
This was a talking point at the time, as the PSNI were raising awareness about it and some people weren’t happy. Myself, representatives from the Guide Dogs NI and the PSNI were on discussing the initiative and why it is an important issue that everyone needs to be aware of.
I was also selected as one of 4 speakers from Ireland to speak at Rare Disease Day 2017 event in Dublin. I was selected because of my campaign to get Vimizim approved in the UK and the north of Ireland. Unfortunately I was unable to attend the event personally, but was able to pre record my speech ahead of the event to be played at it.
It give me the opportunity to highlight the case that in the south of Ireland, the HSE had yet to approve Vimizim for people with Mucopolysaccharide Morquio Disease. I highlighted the case of Grace Cogan in Carrickmacross, Co. Monaghan as an example and why this drug needs approved as a manner of urgency.
I was pleased to learn a few days after this was played, with Health Minister Simon Harris TD in attendance, Vimizim was approved for Grace.
Sadly this was not the case for anyone in Ireland and in recent weeks, we have learnt the HSE have said no to Vimizim funding in Ireland.
The fight continues to get this decision reversed and I will be doing all I can do to help with this fight in 2018, starting with a letter campaign in January.
On a more personal level, I returned to doing more of the things I loved to do, but did less of in 2016 because I was too tired, too illness or little energy.
One of my big passions was Comic-Con and especially Cosplaying. Usually I would attend one per year, but because I missed the 2016 calender and all my buddies, I hit three of them in 2017.
Hoping to hit two of them in 2018, so keep an eye out for me somewhere along the line.
So whilst 2017 has been a good year for me, health wise, personally and career wise, I cannot afford to rest on my laurels. 2018 is bringing new challenges and potentially new worries. These are debates and blogs for another day. I don’t want to leave 2017 on a sour note, when it has been so good to me.
So raise a glass to 2017. Remember the good times, learn from the bad times and bring 2018 in with a smile.
My new year resolution is the same as every year, keep improving upon myself as a person and to offer an helping hand to those who need it.