This is a new idea we have come up with to keep people updated with what we at DMD Pathfinders have been doing each month, it will try to compile the information from our various outlets, and as we get more used to it probably stuff that the charity has done on in the background, which we don’t always mention. Please bear with us as we get our footing, and let us know if you find it useful.
The start of the month saw us taking part in the Action Duchenne International Conference, as you can imagine there was a lot of preparation done for this, Jon, our CEO, did an amazing job liaising with the Action Duchenne team, working out what sessions we should present and also the logistics, getting lots of people with our condition from all over the country (along with their carers) to Birmingham and arranging accommodation was no easy feat.
You can read Jon’s reflection on the conference here and see recordings of our various sessions on our Facebook video page, we also have some photos taken by our own official photographer (full disclosure this was me and my first time taking photos at an event like this!). Our nutrition guide seemed particularly popular, which you can download from our website’s downloadable advice guides section.
Talking of the website you may have noticed our new look, the new site was kindly created with help from Duchenne UK we think it looks great and hope you find it useful, there are still a few things we need to improve and tweak but this will be an ongoing process.
This month our Chair, Mark Chapman was discussing and demonstrating assistive technology at the ATLAS (Assistive Technology for Learners Across Scotland) discussion forum. Members include people within Education authorities with a remit of supporting young people with complex disabilities in school by providing appropriate assistive technology. Later in the evening Mark attended the Cross Party Group on Muscular Dystrophy at the Scottish Parliament, chaired by Jackie Ballie MSP. Items included a discussion on new pathway for assessing ultra-orphan medicines and a discussion on hospice and respite provision for young adults with life limiting conditions.
On Twitter we have also received good feedback from our work, here’s one example from the NHS –
I forgot to mention yesterday the work @DMDPathfinders have done with the OU Sexuality Alliance. The alliance produced guidelines on supporting young people in hospices with sex & sexuality needs. A tricky subject but some excellent guiidance: http://www.open.ac.uk/health-and-social-care/research/sexuality-alliance/sites/www.open.ac.uk.health-and-social-care.research.sexuality-alliance/files/files/Guidance-40pp_03-17_email.pdf @drsaraearle
Please follow us on Facebook , Twitter and this website for more information on our charity and what we do, also use this hashtag #DMDadultliving if you would like to share what everyday life with DMD is like, whether you have DMD yourself or are a parent, relative or friend of someone with the condition.