Our August Monthly Honours goes to Jon Rey-Hastie!

On the left is a photo of Jon Rey-Hastie with a shirt that says f**k your pity, on a green background which says Monthly Honours Award for August 2022.

Here I am, another Pathfinder’s Neuromuscular Alliance monthly Honours newsletterinterview to bring to you. This month is a rather special one and I feel honoured myself to begiven the task of carrying out the interview. Sitting opposite me is a man you should allknow as our much loved, former CEO and Co-founder, Mr Jon Rey-Hastie. […]

Chloe Timms on publishing her first novel

I’ve loved writing for as long as I can remember. As a child I’d fold pieces of paper in half, illustrate the front cover and write stories about my friends and boys I fancied. Writing is a great leveller, and as a disabled child unable to do ballet or play sports like my non-disabled friends, […]

Loneliness

Black and white photo with a solitary tree

Loneliness can be a strange thing. You can be surrounded by people and still feel lonely, sometimes painfully so. Let’s try and explore why this may be the case. I believe that one of the problems may be that people tend to treat being alone the same as being lonely. I don’t think that this […]

Freelance – Tanvi’s Top 5 Tips

5 top tips for Freelancers Tanvi. Green background with white text. White circular pathfinders logo in the top right and a photo of an asian women with long dark hair, wearing a black jumper with white flowers, in a circular frame in the bottom left hand corner

Going freelance just over five years ago was one of the best decisions I made. It can work really well for some people. Balancing lots of spinning plates is a challenge for most. Adding a long term neuromuscular condition into the mix can mean it’s tricky to keep a balance between work, health, relationships and […]

Am I Suffering¿

Grey clouds with the sun bursting through behind

One of the best things about a peer led organisation is that everyone has a voice. Pathfinders Neuromuscular Life is a blog written by members of our community for members of our community. Our blog can be used to share practical tips or personal experiences but it is important to remember they are not necessarily […]

Powerchair Sports – My Powerchair Football Story

Liam Ashton My name is Liam Ashton and I’ve been playing powerchair football for 6 years and power hockey for 10 years at Greenbank Sports Academy in Liverpool. I have DMD, but that doesn’t stop me playing the sports I love.  I was introduced to power football in 2016, when my power hockey coaches, Gerry […]

What it’s like: to be a woman with a muscle-weakening condition

This week marked International Women’s Day 2022 (08/03/22). The purpose of InternationalWomen’s Day is to celebrate the achievements of women while crushing stereotypes andchallenging bias with an aim to achieve gender equality. The theme for this year’s InternationalWoman’s Day was ‘Break the Bias’ (#Breakthebias) – but what does that mean if you’re a woman with a […]

Rare Disease Day 2022

On the 28th of February 2022, Pathfinders will be celebrating Rare Disease Day! Rare Disease Day is a global movement that works towards equity for people living with a rare disease. Since its creation in 2008, it has played an important part in building a diverse international community that is global, diverse and united. Rare […]

You Can Care Week

From the 21st to the 28th of February, Pathfinders is celebrating ‘You Can Care Week’! The awareness week aims to highlight the brilliant people working in the care sector and to encourage more people to join.  This is especially important in 2022, as we recover from the pandemic and start to get back on the […]