Well the New Year has got off to an excellent start.
At the end of January, Lowri had a meeting with Professor Al-Chalabi, lead MND researcher in the UK along with Sian Guest, Publicity and Policy development officer for the MND association and Adam Price, leader of Plaid Cymru in the Senedd.
The purpose of the meeting was to identify what set up Wales as Nation would require in order to access a portion of the 50 million funding that the Health Secretary has released as potential new funding for MND research in the UK.
The meeting was a huge reality check as at present, not only is there no suitable centre that could be put forward as a satellite centre for research in Wales, neither is there a neurology team in place capable of staffing such a centre. Individuals can no longer use lack of funding as an excuse when it has become apparent that it is lack of ambition and drive that is holding Wales back.
As of the end of January, 50 MND suffers were waiting to be seen in the newly launched SMART trial in Wales with only one patient having been enrolled.
Following on from that meeting, steps are being taken to try and develop a centre of excellence for running clinical trials in Wales and to improve the existing Neurology set up in order to develop a satellite research centre in Wales.
An all party debate is also proposed for the Senedd in the coming weeks.
Hannah has continued with her excellent PR efforts and the end of January also saw the Western Mail focus on Motor On and MND research in its health section.
Early February saw Bob and the Motor On team being recognised by S4C in their “Dathlu Dewrder” (celebrating Heroes) awards. Bob was rather stunned as Lowri had forgotten to tell him that he had won and he thought he was just taking part in a routine interview.
Early February also came with the news that the Welsh Rugby Union were partnering with Motor On Cymru for the Wales v Scotland Game, which also supports MND funding and research through its association with the Doddy5 foundation. Funds raised on the day will be donated through Motor On to the Doddy5 foundation to assist with its ongoing efforts in finding a cure for this terrible disease.
Many of the Motor On team have been clocking up the miles for the Doddy 5 challenge which culminates at the game on the 12th of February
Challenges for the Year Ahead.
Lowri and Nick – and hopefully a few more have signed up for the Calledonian Etape – a easy 85 mile closed road race in the Scottish Highlands on the 15th of May. The scenery is stunning and the welcome amazing and being a closed road race, you can make the most of the down hill bits.
We would welcome a few more cyclists if you are up for the challenge.
Will has decided that road races are too easy and is aiming to run a half marathon up the side of Snowdon in July. Lowri is planning on the slightly less demanding 10k route.
Any one fancying a work out for the legs would be welcome to joint them.
September will see a number of Motor on members running in the Swansea Half Marathon, again, if you are looking for a challenge this a flat and easy half marathon around Swansea Bay.
On a more cultured note, Heledd is arranging a concert for the Autumn, and Nathalie is working on a Winter Ball – more details to follow.