Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

Trustee in me

A photo of Sarah Rose

I’m Sarah and I am delighted to be joining Pathfinders Neuromuscular Alliance as a trustee. I have Ullrich CMD also know as Collagen VI myopathy. I have volunteered with my local Citizens Advice on the Research & Campaigns Team for the past 13 years and with MDUK, chiefly as one of the mods on their TalkMD forum. 

I have crossed paths with many people with Neuromuscular conditions over the years that have felt out of the loop, who are struggling to find information or don’t know where to start – particularly those that have adult onset conditions. 

I became aware of DMD Pathfinders through some of its members and I remember being very impressed with the guides on ventilation and nutrition and the general ethos. I don’t think there’s anything quite like Pathfinders around and I was very excited to learn that it was expanding to cover all Neuromuscular conditions. I am certain that pathfinders will continue in the same vein, getting things done, addressing the current issues and using the expertise and experience of members old and new to achieve great things. 

If those that have been through certain experiences and faced barriers can impart useful information to others so they don’t have to use valuable time and energy navigating their way through them that that can only be a good thing!

I live in East Sussex, have a 24hr care package and employ a team of PAs to support me. In my free-time I enjoy music, films, paper quilling and I dabble in writing poetry. I also love spending time with my two young nephews and have taken a lot more interest in my garden of late – a real saviour during lockdown! I look forward to getting to know you all.

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