DMD Pathfinders January Update

We haven’t been quite so visible in our activities this month, this was anticipated and planned for by us at the end of last year, we knew January would be quiet due to few events happening early in the year and other organisations catching up after the Christmas/New Year break, our CEO was also moving from one local authority to another, which is no small task when you have a complex medical condition!

We haven’t been idle though and have been keeping things running smoothly in the background and planning the year ahead for DMD Pathfinders.

As individuals we’ve all been very busy, our CEO has moved as I mentioned above, various members have had to cope with illnesses that always occur at this time of year, simple colds for us can quickly turn into more serious issues such as chest infections.  We have also been planning fundraising, looking for new grants, continuing the process of hiring a development worker and planning meetings.

Below is a message from our chair Mark Chapman on his hopes for the year ahead –

Mark at theAction Duchenne International Conference 2018

I’m looking forward to the year ahead, that I hope will be another successful one for DMD Pathfinders.

I already have 3 dates in my diary for February.  On the 12th I have a steering group meeting to plan one of our upcoming adult events being held in conjunction with Prince and Princess of Wales, MDUK and the Scottish Muscle Network. The event is scheduled to take place in Glasgow in May, more details to follow soon.

On the 26th of February I’ll be attending a consultation panel looking at the new Scottish benefit system, which is being set-up by the Scottish Government.

On the 27th I’ll be attending the Cross Party Group on MD, which will be held in the Scottish Parliament. I hope to discuss relevant issues for DMD adults.

Later in the year I hope we will have a few events across the country, hopefully including one in Northern Ireland for people on either side of the border to attend.

Daniel Baker a Trustee of DMD Pathfinders has this to say –

Brendan Coyle and Daniel in Bath

Brendan Coyle and Daniel

I am hoping that this year DMD Pathfinders will develop our links with other muscle wasting charities and organisations further, and that together we can make an even bigger difference in educating and helping people with Duchenne.

Last year we seemed to be gaining greater respect and the understanding that we as a user led charity had valuable insight and knowledge that others do not, our publications were very well received by the community and medical professionals.  We hope to produce more publications this year and continue fighting for adults with DMD.

 

 

Oh and it snowed today, which is no obstacle to adults with DMD!

a wheelchair in the snow with a dog running past

Daniel Baker and Mya