DMD Pathfinders aims to improve the quality of life of teenagers and adults with DMD. To do this, we involve adults with DMD to help us identify what is needed and how we can help. Our current projects are shown below:
Advice & Information
Advice & Advocacy Service: We provide advice and advocacy for adults with DMD and their families. We work with individuals to identify what they want to achieve and help them to access existing services or work to secure new provision when necessary. Using our lived experience we can advise on a wide range of issues from accessing air travel to going to university or securing a care package. Adults are encouraged to contact us directly to access the service.
Information Guides: We work directly with clinical and subject experts to provide a range of information guides. Existing guides include a ventilation FAQ and a guide to assistive technology for iPhones and tablets. We are currently working on a nutrition guide. All our published guides are available here.
Events & Outreach
Outreach Programme: We run regular events at hospices and colleges meeting with groups of young people with Duchenne, to highlight what can be achieved as an adult and provide an opportunity for young people to quiz older adults on their experiences. The events are highly praised for their aspirational, positive approach.
Action Duchenne Conference: We are pleased to work with Action Duchenne on their annual International Conference, presenting a programme specifically targeted towards adults with DMD. In 2017 we live-streamed sessions on mental health and well-being, holidays, employment and volunteering, managing a care team and physiotherapy for adults.
Peer Support Group: Our closed Facebook group provides a safe space for adults with DMD to share their thoughts, experiences and concerns with other adults living with DMD.
Volunteering: We provide a number of volunteering roles for adults with DMD. These include our network of Pathfinders ambassadors, who provide consultancy services to organisations as well as mentoring to groups and individuals through our outreach programme.
#DMDadultliving campaign: We use our social media activity to raise awareness of the diverse and varied lives of adults with Duchenne. We invite our members to use the #DMDadultliving hashtag to share their lives with us and change the narrative from tragic depictions of disability to a recognition of the excellent quality of life that are possible with the right care and support.
Adult research campaign: Through our adult research campaign, funded by Duchenne UK, we are aiming to ensure new treatments for DMD are relevant and available to adults at any stage of the disease, to ensure no one is left behind in the race for a cure.
Standards of care campaign: Our standards of care campaign seeks to identify best practice and improve consistency of care for adults with DMD. This involves working directly with the clinics themselves and in partnership with other charities such as MDUK in their Adult North Star programme as well as the NHS England Personalised Care Group.