Meet Tyran, Our New Development Worker

Meet Tyran, Our New Development Worker

Hi, I am Tyran Hawthorn, one of the new Development Workers at DMD Pathfinders.  I currently stay in Clanfield with my parents but have my own critically trained care team which enables me to be self sufficient and live relatively independently. I’ve also been to university where I studied Photography. At university I was involved in exhibiting my work, as well as others, helping to organise, set up and raise funds to pay for equipment and spaces for exhibitions. I have also helped to market exhibitions, which has included doing interviews and profiles for television, and appearing in documentaries. Throughout university, I’ve also arranged studio shoots, directed models and completed photographic projects to a set-brief, demonstrating that I have the skills and drive necessary to complete complex and client-focused work to an excellent standard.

Working for this charity means the world to me, as I am an adult living with Duchenne Muscular Dystrophy myself. This role will enable me to have a platform to use my experiences of living with DMD, to mentor others with the condition and their families as to what is the best medical practice to live a long, healthy and fulfilling life. I also want to inspire younger people with Duchenne, despite all the difficulties, that they can still strive to achieve their goals and ambitions, as I believe that disability does not mean inability.

Another reason is to pioneer development of new treatments and research for adults living with DMD, making sure that all pharmaceutical companies involved in this field are considering adults with Duchenne in the forefront of their thinking and involving them in the development of these treatments.

My personal aim, for DMD Pathfinders, is to work with technology companies to develop  assistive technologies that will help adults living with Duchenne improve their quality of life, by increasing independence and mobility.

I’ve been involved with this charity for about three and half years now, where I was Trustee and Co-Chair until I took up this role. Whilst volunteering for DMD Pathfinders I have given many presentations on living with Duchenne at a number of places, including Action Duchenne Conferences, have done consultancy in the form of training for a pharmaceutical company on the complications of Duchenne. I have been involved in helping to develop guidelines on the Standards of Care for adults, through the MDUK Adult North Star Project. Organised a fund-raising Rally and Dinner for DMD Pathfinders.

I’m really excited to finally start this new position and looking forward to taking on the challenges of developing the reach of DMD Pathfinders throughout the UK. In this role I will be doing the following:

  • Offering one to one mentoring support to whoever needs assistance with something.
  • Organising outreach events at colleges and hospices where users can get useful advice and information from adults with the lived experience of DMD, on various topics such as assistive technology, getting a care package, going to university, living independently, ventilation and nutrition.
  • Running social events where adults with DMD can share their experiences, make friends and genuinely have a good time.
  • Arranging fundraising campaigns to raise awareness and vital funds for DMD Pathfinders. Enabling us to run information and social events for young adults with DMD, allowing people with this rare condition to connect with other adults and learn how to access the support they use. Also the funds will be used to develop information resources for adults with Duchenne on managing their health and accessing independent living.

If any Adults living with DMD, family members, partners, carers and organisations, want to get in touch with me, please free to do so at: tyran.hawthorn@dmdpathfinders.org.uk