Finding purpose in volunteering: My journey with MS
Susan reflects on the variety of volunteering she’s done with us, at both a local and national level. And shares the thrill of her recent skydive in aid of our Stop MS Appeal.
I was diagnosed with relapsing remitting MS in August 2005. Back then, treatment options were few and far from ideal. So the relapses kept coming every couple of years until 2018, when I began a new disease modifying therapy. I haven’t had a relapse since. I still experience progression independent of relapse activity. But it’s been limited, and I count myself very lucky.
I joined the MS Society as soon as I was diagnosed. For many years there wasn’t a local group near me. But in early 2018 I helped to form the new West Central London Group, covering several boroughs. That same summer, I applied to join the MS Society’s Board of Trustees. To my delight, I was elected.
Getting stuck in
For three years, I was completely immersed in the charity’s work, both nationally and locally. I had the privilege of visiting the myelin repair lab in Cambridge and the Tissue Bank at Hammersmith Hospital. Meeting the brilliant researchers and seeing the impact of the MS Society’s funding up close deepened my commitment to our shared mission of stopping MS for good.
I became the fundraising volunteer for the West Central London Group, drawing on my years of professional experience in international fundraising. Our group hosts monthly coffee mornings and social evenings, weekly in-person gym sessions, online meditation classes, and online exercise sessions. Thanks to four years of National Lottery funding, we’ve been able to keep these fitness activities going strong.
Every December, we offer subsidised tickets for more than 30 members and friends to attend a festive concert at the Royal Albert Hall. This year we’re adding our first festive lunch. It’s been so rewarding to see friendships form and confidence grow among our members.
Sharing my lived experience
Having worked in public health for my whole career, I’ve always been fascinated by the science behind MS. I first got involved as a lay reviewer, helping assess research funding applications submitted to the MS Society. We make sure they’re clear, relevant, and meaningful for people living with MS.
Last year I joined the Expert Review Panel which decides on funding for shortlisted applications. This panel includes clinicians, scientists, and a few of us lay members. It’s encouraging to see how much our lived experience is valued alongside professional expertise.
I’m also part of Brainstormers, the Public and Patient Involvement group linked to the MS Register. We meet monthly to discuss new research projects that plan to use MS Register data. These sessions keep me informed and connected and I’ve met some wonderfully dedicated people along the way.
An unforgettable leap to stop MS
Last year, I raised £5,000 by tackling England’s longest zipwire near Bluewater. This year, to celebrate turning 60, I decided to take on my biggest challenge yet — a skydive! Ever since scuba diving as a teenager, I’ve wanted to experience nature from the air as well as the sea. I’ve paraglided, and floated in hot air balloons, but skydiving felt like the ultimate test of courage and a spectacular way to raise money for the Stop MS Appeal.
My target was £6,000, but I’ve almost reached £7,500. I dedicate my fundraising to my uncle, who was diagnosed with primary progressive MS in the 1950s, when there were no treatments at all. He died in his late fifties, and I want to help ensure that future generations have more hope than he ever did.
The jump itself was unforgettable. On a bright sunny day, we soared to 12,500 feet before stepping out into open air. The freefall felt endless and exhilarating — pure freedom. When the parachute opened at 5,000 feet, we rose again and glided slowly through the sky, completely at peace. My tandem instructor was wonderful. He even tucked his foot under my weaker right leg so it wouldn’t drag on landing. It was an extraordinary experience, and I’d do it again in a heartbeat. In fact, I plan to when we visit New Zealand in 2026!
A life of volunteering
I’ve been volunteering in one form or another since high school, and I now volunteer for two other charities as well as the MS Society.
Since stepping back from paid work, I’ve found volunteering more fulfilling than ever. It keeps me mentally active and socially connected, and gives me a strong sense of purpose. I’ve learned so much about other people, and about myself.
A chance to make a difference
My mother was a master charity fundraiser, who taught me the value of giving your time and energy to causes that matter deeply to you. Many people feel nervous about fundraising. But I always say that you’re not asking for yourself. You’re offering others a chance to make a difference.
To anyone thinking about volunteering with the MS Society — go for it. You’ll gain friendship, confidence, and the joy of being part of a community that truly understands. And for those already involved, keep challenging yourselves. You might be amazed by what you can do, and by how much your courage inspires others.
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