Monthly Roundup and Seasons Greetings 2018

Pathfinders logo surrounded by a wreath

This monthly roundup will be slightly different as we reflect on our year here at DMD Pathfinders.

Reflection

This year has been a busy one and the charity has been growing at a steady pace, we have been developing as a team, raising money, earning more respect among professionals, charities and the community in general.

We must also remember those we have lost this year to Duchenne, this is something always in our minds, we fight to support and help adults with Duchenne live a better life, but the condition is still serious with no cure.

As a charity we try to remain positive and give other adults and their families inspiration and hope, but we all know people who are no longer with us, some close friends, we have suffered heartbreak and a lot of us have come close to not being here ourselves.  This is why we do what we do, to make life as good as it can be for others and remind services, organisations and professionals not to forget us, a generation that was not expected to be here.

Our Year

Tyran in front of a rally car with two dinosaurs standing near him

Tyran Hawthorne ‘GIB or Bust’ rally

A brief roundup of some of the charitie’s achievements this year –

  • We were awarded a £75,000 Grant from the Tudor Trust to be used to employ a development worker.
  • Tyran and his family raised £5,000 from an event ‘GIB or Bust’ which involved our vice-chair’s family driving an old banger from Cornwall to Gibraltar.
  • Various fundraising events over the year, which were all very successful, including a very generous donation from Erskine Stewart’s Melville Schools (ESMS), which our chair Mark’s cousin’s husband Mike arranged as the headmaster.
  • DMD Pathfinders has been involved at a strategic level in NHS England advising on the development of personalised care.
  • Our chair Mark’s cousin Kirstie, who raised a significant amount by taking part in the Borders Three Bridges Triathlon at the end of 2017.
  • Attended NMD Fest 2018 and hosted a joint session with the NMC sharing experiences of university, employment, housing and assistive technology.
  • We have worked with pharmaceutical companies, researches and services to give a voice for those with Duchenne.
  • Launched our new website with support from Duchenne UK.
  • Presented several sessions at the Action Duchenne International conference which were live streamed so people not able to attend were able to be involved.
  • Launched games night and hosted social events to encourage social interaction between people with Duchenne and others.
  • Produced a nutrition guide for Adults with Duchenne Muscular Dystrophy.

You can find much more on the DMD Pathfinders Facebook page including videos and photographs from several events.

Seasons Greetings

We would like to wish you all of our best wishes for this season and hope you all have an amazing 2019, thank you all for the support you have given us this year!

 

Supporting DMD Pathfinders

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.

Again thank you to everyone who supports us, we couldn’t do what we do without you.