BY JON REY-HASTIE AND JAMIE HALE
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.
We’ve been working with young people to build their skills and confidence and they’ve put on some great online events, on accessible holidays, driving, accessible gaming and even anime! It’s been fantastic seeing how the young people have developed their confidence and skills to design and host events to benefit our community.
We’ve been developing new advice resources on our website and sharing blogs of how people have been managing in this tough year. Alongside our groups on facebook and whatsapp these have been a vital source of information for our members, who have shared advice on everything from ventilation, managing PAs, shielding, PPE, staying in hotels and so much more!
We’ve been carrying out important research to inform our future campaigning to increase accessible housing, and to advise how transition support can be improved for people with DMD.
There’s still more to do!
We have big plans next year, both for the wider community and some more condition-specific work with conditions such as DMD, SMA and CMD. Our general work next year will include a residential training camp for living independently, setting up regional campaigning groups, improving the information and advice resources on the website and rolling out our new training for PAs of people with muscle-weakening conditions.
Even though we’re growing year on year, we know there are many more people out there who need our support, and have the potential to help others in turn. We need to raise money to help us reach out to more people, campaigning to tackle key issues such as PA recruitment and to go further in helping people to secure care packages and independent living. So please consider making a donation this Christmas to help us continue our work into the next year.
As a last word, we’d like to thank all the volunteers, trustees and staff of Pathfinders Neuromuscular Alliance, who have helped to make this an excellent year for the charity and whose dedication to the community is simply awesome. We are so proud of everyone for their work!