BY JON REY-HASTIE The time has come for a change! I have decided to move on from my CEO role at Pathfinders after 5 ½ years, in order to pursue new challenges and opportunities. It is with great pride that I look upon Pathfinders now and how far we have come from our humble beginnings. […]
By ANTHONY PRICE When it comes to passion, I know few with as much of it for raising awareness andunderstanding of life with a neuromuscular condition and promoting independence as theman sitting in frame on my PC screen, James Parkin. He is the recipient of this month’sPathfinders Neuromuscular Alliance Honours and the creative mind behind […]
As co-CEOs of Pathfinders we wanted to share our thoughts about this year and wish everyone a Happy Christmas! Pathfinders has been working hard all year to support people living with muscle-weakening conditions.
This month Benjamin is being recognised for contributions amongst the Duchenne community, in particular work on research projects and dedication to highlighting the needs of adults with a neuromuscular condition. He has been involved with Pathfinders for some time including as a trustee for a few years. He saw being on the board as a […]
Pathfinders is delighted to announce that the National Lottery Community Fund has decided tosupport our Disability Rights Advocacy Programme. Pathfinders knows from our own experience and from the work we do to support others, that oncepeople with muscle-weakening conditions finish education, the support they receive drops offdramatically. We know how hard it can be to […]
Pathfinders Neuromuscular Alliance is partnering with Duchenne UK, to address the lack of choice and control over accessible housing for people with muscle-weakening conditions.
There has been considerable anxiety amongst people with neuromuscular conditions about the risks of Covid 19. While there have been anecdotal reports of people developing Covid 19 and recovering, any source of respiratory infection is very concerning for people whose neuromuscular conditions involve any degree of respiratory weakness. Covid Vaccines Advice from Professor Francesco Muntoni, […]
Public transport Buses Buses are normally expected to be wheelchair accessible nowadays, although rail replacement buses are not. Local buses can be quite narrow, and the wheelchair space can be quite small, but it should exist. Sometimes there can be disagreements about whether a wheelchair user or pushchair have priority in the wheelchair space. Legally […]
There are two main avenues of care funding; Social Services, and Continuing Healthcare. Social services fund care for people whose needs are primarily around nutrition, personal care, dressing, and daily life, whereas Continuing Healthcare (CHC), which is NHS funded, is more for the management of medical conditions. While there are no clear-cut factors that define […]