Monthly Roundup June 2019

A busy month again for us here at DMD Pathfinders, apologies for not getting this out sooner  but I have had care issues (a common thing for us with Duchenne) and various personal things to deal with.  Enough about me for now though, let’s get on with the roundup.

Our games night was great fun and something we’ll be doing again, it’s a great way of socialising in a lighthearted way.  We hope more people can attend the next one though, so please once we have a date set share it with all your friends, groups and on social media, it would help us a lot.

a picture of a room with a glass window and empty chairs at Trellors

Pathfinders Development Worker Tyran Hawthorn and our CEO Jon Rey-Hastie visited Treloar’s college where they spoke to young disabled people in their final years of college about what comes next. It was great to hear the many really positive aspirations the young people have for their future.  Many keen to live independently, work, volunteer and go to university. Our message was clear, it won’t be easy in this age of austerity where you have to fight for every scrap of support, but it’s possible, as many of us demonstrate, to achieve all those aims.

And now a message from our chair, Mark Chapman –

As Chair, I’m pleased to welcome 4 new trustees, Ben James, Phillip Carroll, Robert Watkins and Sanjeev Mann. I look forward to working with them in shaping our future direction with their fresh ideas. If anyone would like to become a trustee or volunteer for us please get in touch.

 

On the 7th of June I had a very worthwhile visit to meet two young teenagers with DMD at Strathmore Centre in Forfar, a small respite support centre for young disabled people with complex needs, run by Moray Council. I was very much impressed how chatty the boys were and with the questions they prepared, it certainly kept me on my toes! I was happy to hear afterwards that they thoroughly enjoyed my visit and each of them took different things away from our discussion. One of the parents commented their son was, and still is, ‘Buzzing’ after my visit and is telling everyone about it.

Mark Chapman sitting between Shelley Simmonds CEO of Action Duchenne and their Scottish Advocacy officer, John Miller

I attended the Cross Party Group on MD at the Scottish Parliament on the 12th of June, chaired by Jackie Baillie MSP. Items discussed included; Latest developments on access to SMA treatment Spinraza in Scotland, this could also be relevant to how potential treatments for DMD are progressed in the future; FOI request responses on psychological support and accessible housing, followed by a discussion. Thanks to Jonathan Kingsley from the acting secretariat, MDUK. It was also great to catch up with Shelley Simmonds CEO of Action Duchenne and their Scottish Advocacy officer, John Miller.

Scottish Powerchair Football Association trophy for Connor Colhoun

Congratulations to Connor Colhoun for his achievement on being awarded Championship Player of the Year at the Scottish Powerchair Football Association’s first ever Awards Night on the 29th of June, appropriately held at the home of Scottish football, Hampden Park. Well done to all the other award winners on their achievements. The event was a great success and was also attended by ex Scotland Manager, Craig Brown who told some entertaining stories about his career. (more info at https://thespfa.org/)

It’s fantastic to see the growth of Powerchair football across the UK, if anyone is interested we’d encourage you to find out if there’s club in your area. Activities like this are great for tackling social isolation and low self esteem. Watch out for DMD Pathfinders powerchair football Guide, coming soon!

 

Our CEO Jon and our development workers Tyran and Mitch headed to Keech Hospice in Luton for our information social day too this month, you can find the blog post about the very interesting day here.

On Social Media

We try to round up interesting bits and pieces from social media each month, so please use our #DMDAdultLiving hashtag so we can spot your posts!

First off we would like to congratulate Elizabeth Waters and Matthew O’Sullivan on their recent marriage!  May it be a long and happy one

Wedding photo of Elizabeth Waters and Matthew O'Sullivan

 

Jon Hastie has also been enjoying married life!

A tweet from Jon Hastie with a photo of him, his husband and friends - #dmdadultliving is about adults living with Duchenne. Sometimes it’s hospitals, wheelchairs and loneliness. Sometimes it’s married life and getting drunk with friends.

Daniel has been busy and also trying to enjoy summer now it’s finally arrived

image of tweet - Summer Solstice 2019 and an Interesting Week - This week involved a seminar, mental health training, appointments, firing my care agency & finally relaxing on the #SummerSolstice @BarnwoodTrust @WestonbirtArb @RollrightStones #MentalHealth #Photography

Helping DMD Pathfinders

You can help support DMD Pathfinders by donating at Virgin Money Giving, interacting with us on FacebookTwitter 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.