DMD Pathfinders February Updates

This has been a more visibly busy month for us, we have been recruiting, attended conferences and meetings, and discussing our aims as a charity.  Our chair and CEO explain it far better than I ever could so without further ado here’s some messages from them.

 

Mark Chapman Chair of DMD Pathfinders

On behalf of DMD Pathfinders I was pleased to support the SPFA (Scottish powerchair football Association) in securing last week’s Parliamentary debate on this popular and growing disability sport. Our charity is keen to promote this type of inclusive activity that tackles social isolation and builds self confidence in those living with Duchenne, neuromuscular conditions and other disabilities. Thanks to Jeremy Balfour MSP and John Miller, Action Duchenne advocate.

Powerchair footballers

On Tuesday 12th I attended the steering group meeting with Bryan Purdue and Jon and Tyran online, for the event we are planning to hold with PPWH (The Prince and Princess of Wales Hospice), SMN (Scottish Muscle Network) and MDUK (Muscular Dystrophy UK) on May 12th at the Beardmore Hotel in Glasgow (details coming very soon).

On Tuesday 26th I attended the Social Security Experience Panels, contributing to the setting up of a new Scottish Welfare Benefits System for the DWP benefits that are being devolved to Scotland. I was in the group discussing the role of advocacy in supporting claimants to navigate the new system once it is set up. They are intending to design a much friendlier, equal and fairer system that fully takes account of all needs.

On Wednesday 27th I attended the Cross Party Group on MD in the Scottish Parliament chaired by Jackie Baillie MSP. There was constructive discussions on: developments to access the SMA treatment Spinraza and the new pathway for assessing ultra-morphine medicines in Scotland; access to psychological support for those living with neuromuscular conditions, their families and carers; addressing the shortage of accessible housing.

Josh Langley presenting for DMD Pathfinders at the Action Duchenne Conference in 2018

Josh Langley presenting for DMD Pathfinders at the Action Duchenne Conference in 2018

We are all incredibly shocked and saddened to learn of the passing of Josh Langley. Josh attended our NMDFest last year and was an amazing guy, we were looking forward to working with him a lot more closely. To be taken so suddenly when he had so much to offer is heartbreaking. Our deepest sympathies to his family and friends. xxx

And now a message from our CEO.

Jon Rey-Hastie

Jon Rey-Hastie CEO of  DMD Pathfinders

Over the winter months (when going out is such a pain in the bum) DMD Pathfinders has been taking some time to reflect on our strategy and direction, and we are excited to be kicking off March with some big plans and renewed enthusiasm. We’ll be sharing the details of these as and when we can, but we are looking forward to some exciting events and some new faces in the DMD Pathfinders staff team. We are most excited about what this means in terms of what we will be able to deliver for adults with DMD.

Our intention at DMD Pathfinders is very much to meet the needs of adults with DMD, and among other things, our trustee board plays a key part in identifying what those needs are and how the charity might address them. We are always looking for adults with DMD and others with experience of the condition (e.g. through supporting a family member etc) to act as trustees, but we also welcome any input from adults with DMD in helping us to decide what we do.

We know there are big unmet needs for adults with DMD including a lack of social opportunities, difficulty in getting care funding and recruiting PAs, and finding employment. Here at DMD Pathfinders we want to do what we can to start to address the problems that people face. We’ll soon be announcing our strategy to do just that over the next year. In the meantime, don’t forget you can always contact us for information and advice, and help with any challenges you are currently facing. Please get in touch if there is any way we can help you!

You may have seen us advertising for a development worker recently, we are very pleased to announce we have held interviews this month and found two suitable candidates, more on this and an official announcement will follow soon.

Finally here’s some interesting content from our social media feeds, please note reproduction does not mean endorsement.

Images of social media posts

 

You can help support DMD Pathfinders by donating at MyDonate, interacting with us on Facebook, Twitter and YouTube, and using our social media hashtag #DMDadultliving when sharing stories of adults living with Duchenne Muscular Dystrophy.  You can also contact us directly at info@dmdpathfinders.org.uk or 01273 252555.