Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

National Lottery funding will take Pathfinders to the next level!

Pathfinders is delighted to announce that the National Lottery Community Fund has decided to
support our Disability Rights Advocacy Programme.

Pathfinders knows from our own experience and from the work we do to support others, that once
people with muscle-weakening conditions finish education, the support they receive drops off
dramatically. We know how hard it can be to get a care package, manage care, find work, live
independently, access the right equipment and find information on how to manage your health. It’s
a complex maze of services which you have to navigate, many of which don’t seem to want to help!

Over the last few years, Pathfinders has worked hard to bring the community together and share
vital information to help people thrive. Our new lottery project gives us the chance to take this work
to another level. With this funding we will:

● Set up an annual Pathfinders Academy programme starting in 2022, to support young
people with muscle-weakening conditions to prepare for life after education. The
programme will feature a 3-day residential advocacy camp, with information sessions on
topics from how to get a care package to how to challenge discrimination, as well as
personal development sessions to help young people understand their own strengths,
weaknesses and personality types and put this knowledge into practice. Most importantly,
the Academy will create a group of peer advocates who will support each other and the
community to succeed.

● Continue the learning of the Pathfinders Academy with a year-long programme of personal
development sessions for our peer advocates, with vital practical information about going to
university, finding employment, sex and relationships, living independently and accessing
equipment and assistive technology to make life easier.

● Launch a social action project led by our young peer advocates to work towards a more
inclusive society. Our young peer advocates will bring together the community, raising
awareness of barriers and discrimination and working with people with muscle-weakening
conditions of all ages to address these.

● Run regional events for the wider community of people with muscle-weakening conditions,
to share vital information on living independently, accessing care, support and equipment
and staying healthy. Events will bring new members on board with our social action work,
strengthening our voice and influence as a community.

In line with Pathfinders’ approach, our training and development sessions will be led by adults with
muscle-weakening conditions who have successful experience of living independently and navigating
all these issues themselves. Our community has many examples of people who are thriving, and this
project will allow the knowledge and experience to be shared with the next generation. This is
information you can’t find anywhere else.

We have some prep work to do in the first year of our project. We need to gather and share the
information that can transform the lives of young people. We need to work with our partners in
schools, colleges and hospices, as well as other charities, to make sure the information and support
our community can offer reaches young people. We need to address how we can deliver this much-
needed work in the context of a world still dominated by Covid-19. And we need the community to
help us do this.

Pathfinders CEO Jon Rey-Hastie said:
We are thrilled to receive this lottery funding. This project is vital to Pathfinders and will allow our
community to grow and become stronger. Our collective skills, experience and voice can bring about
real change for all of us and give our young people the greatest possible start. Working together we
can help everyone with a muscle-weakening condition to learn how to thrive. That means more of us
living the lives we choose, in the ways we want.

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