January 2020 Update – Looking Forward

A road leading into the distance with the DMD Pathfinders logo overlayed

The January 2020 Update roundup will mainly be a look forward to our plans for the upcoming year.  A big highlight of this year will be DMD Pathfinders Chair of trustees, Mark Chapman’s, Birthday.  Mark will be turning 50 this year, this is something we feel should be celebrated, so celebrate we will! We will be holding a very special event on the 19th of April.

Personal Assistants

Two hands palms outward with a world map painted on them

This year one of our focuses will be a very important topic for those with Duchenne Muscular Dystrophy, Personal assistants.  We will be covering areas like recruitment, keeping boundaries and sharing our experiences.  The first post in this project is written by Mitch, one of our development workers, Care: An Ideal World.

Relationships

Another of our focuses at DMD Pathfinders is helping people to understand that people with Duchenne Muscular Dystrophy can have relationships, how this can work and some of the difficulties involved.  Earlier this year we produced a video with Tom Hardwick, a married man with Duchenne.

Upcoming Events

In March some of us from DMD Pathfinders will be attending NAIDEX.  This is an annual event dedicated to the independent living and healthcare industries.

On April the 4th we will be having a DMD Pathfinders Easter party, keep an eye on our Facebook events page for more information.

A photograph of Mark Chapman wearing a hat outside on a sunny day

Mark’s Birthday party will be on April 19th in Edinburgh.  The even will be live streamed and we hope will be a very special day celebrating Mark’s life and achievements.  The event itself will be invite only but if you would like to attend please see our Facebook event page.  Instead of gifts Mark is asking for donations to be made to DMD Pathfinders, named donors of £20 or above will be entered into our charity raffle for some amazing prizes.

Future Plans and Events

This year will be another busy one for us, here are some planned highlights –

Releasing our Employment Guide later in the year.  This is part of an ongoing series of guides we produce to help those with DMD Muscular Dystrophy.  You can download all of our guides from our website in the Living with DMD section.

Launching a new APPG for accessible transport.

Hosting an assistive technology day.

Co-hosting the summer NMD Fest.

Holding our first independent conference for those with Duchenne Muscular Dystrophy.

If you are interested in attending, taking part in or sponsoring any of our activities please get in touch.  You can email us at info@dmdpathfinders.org.uk or use one of the other methods listed on our contact page.

Royal Brompton Hospital Research Opportunity

Unfortunately most studies regarding Duchenne are available only for children, so here at DMD Pathfinders we try to encourage research opportunities for adults too.  Having become aware of some very interesting research that the Royal Brompton are undertaking we would like to share it with you.

The study is being run by the clinical research team at the Royal Brompton hospital and is titled “Growing up on non-invasive ventilation: assessment of multisystem and autonomic complications of neuromuscular and neurological disorders in young adults”.

To participate you need to be a patient under the Royal Brompton, although you can be referred for the purpose of the study.  If you want further information please email daniel.baker@dmdpathfinders.org.uk and he will be happy to put you in touch with the research team.

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.