I'm proud to lead a dedicated group of volunteers who make a difference

My journey with MS began in 2006. It was a year of uncertainty and confusion. One day, I noticed something off with my eyesight. The optician immediately referred me to the hospital, where an MRI scan ruled out a brain tumour. I was then referred to a neurologist who informed me that I had some lesions on my brain, but not enough to conclusively diagnose MS. He reassured me, telling me not to worry, and that the sight problems might never happen again.

But, about a year later, my vision deteriorated again. Another MRI confirmed what I had feared — I had enough lesions to be diagnosed with relapsing remitting MS (RRMS). It was a scary time, filled with questions and uncertainty. I had no idea what the future would hold. Was I going to end up in a wheelchair? I didn’t know what MS would mean for my life, and Googling the condition only left me more terrified.

A turning point

It took about three months for me to recover from that first relapse, during which I developed significant blind spots in my vision, and severe fatigue. I couldn’t drive and struggled to get around. But during this time, I made a choice. I could either let this diagnosis control me, or I could take charge and help others who were going through similar experiences. I chose the latter, and that decision has defined my journey ever since.

After my diagnosis, I was prescribed beta interferon injections, but they didn’t work for me. I relapsed every few months and felt isolated and frustrated by the lack of effective treatments. Through my own research, I discovered a centre of excellence for MS treatment in Stoke-on-Trent. I reached out to the lead neurologist there to receive treatment from their team. This was a turning point in my MS journey. I eventually found the right medication, a one-a-day tablet, and I’ve been relapse-free for over nine years.

Learn more about the different treatments and therapies available for MS

The power of community

During this period, I realised that recovery isn’t just physical. For me, it’s 50% mental attitude. With that in mind, I started an online support group on Facebook. I wanted to create a space where people could share their experiences and offer each other hope.

I began by writing about my own experiences and, to my surprise, people from all over the world started engaging with my posts. It was comforting to know I wasn’t alone. And it was empowering to give others that same sense of connection.

As the group grew, I began using infographics and humour to illustrate what living with MS felt like. This made it easier for others to relate and share their stories. It wasn’t just about offering support — it became a way to advocate for each other, to raise awareness, and to bring a sense of hope to people navigating life with MS.

Searching for more purpose

In 2023, I saw a posting for the role of Chair of the England Council for the MS Society on LinkedIn. I'd always worked in senior positions in various businesses. At that point in my life, I was searching for something purposeful I could do alongside my career. I felt ready to give back in a more meaningful way. Although I had no experience in the charity sector, my lived experience with MS gave me a deep personal connection to the cause. I applied and, to my great joy, was selected to start in 2024.

The England Council exists to amplify the voices of people living with MS across the country.

We listen to the community to understand their needs. Then we report back to the MS Society’s Board so that the services and support the charity provides align with what people need on the ground. Initially, only a few members engaged during my first council meeting. But we’ve grown over time. We’ve reorganised, increased the frequency of meetings and refocussed our efforts on being more action-oriented.

Today, I’m proud to lead a dedicated group of volunteers who are passionate about making a difference.

What it takes to lead

As Chair, my primary focus has been building relationships and working in collaboration. I don’t believe in having all the answers or solutions. Instead, I create an environment where council members can bring their ideas to the table too. We work together to define our vision and focus on what we can realistically achieve. Another key aspect of my leadership is accountability.

Volunteering comes with challenges — people have jobs, families and health concerns that limit their availability. But if you can allot tasks that chime with their individual passions, you can create a system where people are committed because they care deeply about the contribution they’re making.

Looking ahead

In just a few short months, the council has begun a journey of transformation. We’re now more focussed, engaged, and committed than ever before. I’ve also learned so much in my role — about leadership and about the MS community. Working closely with the Executive England Director, we’re planning to connect with the community across the country to better understand their needs. We must ensure the MS Society is responsive and, importantly, increases the relevance, volume and diversity of its reach in the community.

If you’re considering volunteering with the MS Society, I’d wholeheartedly encourage it. Whether you have a personal connection to MS or simply want to help others, there’s immense value in giving your time.

The MS community’s in constant need of hope, support, and advocacy. So your contribution, no matter how small, can make a lasting impact. Volunteering with the MS Society has been incredibly fulfilling for me, and I’m confident it will be for you as well.