Our Campaigning History

Pathfinders Neuromuscular Alliance supports individuals living with muscle weakening conditions across the UK. However we started as DMD Pathfinders – an organisation focused on supporting the adults who are living with Duchenne Muscular Dystrophy.

#DMDAdultLiving Campaign

We used our social media activity to raise awareness of the diverse and varied lives of adults with Duchenne. We invited 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 is 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.

Our Campaigning Future

As we expand our remit, #DMDAdultLiving has become #NMDAdultLiving, focusing on sharing the lives of adults with neuromuscular disorders, changing the narrative from tragic depictions of disability to a highlight of the excellent quality of life that is available to adults with neuromuscular disorders who are given the right support.