Forever Susan: A Family’s Mission to Fuel Hope in MS Research

When Susan Ash’s family gathered for their annual New Year reunion in January 2025 — an event affectionately dubbed the “Ash Bash” — they didn’t expect to leave with the beginnings of a legacy. But by the time they left the kitchen table, an idea had taken root: a commitment to fund ground-breaking research into multiple sclerosis (MS) in her name. The Forever Susan Fund was born.

Set up in memory of Susan, who lived with MS for many years, the fund is spearheaded by her siblings William and Michael, closely supported by her sister Lizzie and brothers Tom, Paul, Charles and David. Significant contributions to fundraising have also been made by brother-in law Kevan, with more fundraising planned by other close family members. Their aim is ambitious: to raise substantial funding for The MS Society Edinburgh Centre for MS Research at the University of Edinburgh, being led by Professors Anna Williams and David Lyons, Directors of the Edinburgh Centre for MS Research. But for Susan’s family, this is more than a fundraising goal — it’s a family mission.

The name “Forever Susan” was coined by William, and it encapsulates everything this family is striving for. It’s a tribute to their sister’s memory — and a commitment to help others facing the same uncertain path. What makes the Forever Susan fund so impactful in MS research is not just the science — it’s the family’s commitment and resilience. Every family member speaks with quiet determination and deep affection when they talk about Susan. “She dealt with so much,” said Lizzie. “But if she knew that something good could come from her story, she would have been behind this 100%.”

Susan’s MS journey, like so many others, was marked by complexity and frustration. Despite her condition, Susan remained deeply involved in her family’s life. As Lizzie explained, “We were very close to our sister. In the latter part of her life, I eventually took over as her carer. What really struck us was the lack of understanding around MS — from care planning to support services — and how hard it was to navigate.”

Michael, who spent decades working in social housing and public service, had long been attuned to the struggles people with complex needs face. But even he admits Susan’s situation brought a new clarity. “I was always very conscious of the challenges she faced,” he shared. “And in her final years, it became more apparent that despite decades of awareness, progress in treatment for progressive MS still felt painfully slow.”

That frustration was the spark. Sitting around the kitchen table on January 4th, the family agreed they needed to act — to create something lasting in Susan’s name. “We didn’t want to set up a charity with all the infrastructure and complexity,” Michael said. “We wanted a named fund, hosted by an institution already doing credible, cutting-edge research. We wanted the money to go where it could make a real difference.”

After researching potential partners, the family quickly gravitated towards The MS Society Edinburgh Centre for MS Research at the University of Edinburgh — a research centre focused on neurodegenerative diseases. “We researched a number of institutions,” said William, a retired school leader. “But it was Edinburgh that really impressed us with how they were going about their MS research.”

Within two months, the family had connected with key researchers and administrators at the Centre. “The openness of the Edinburgh team was extraordinary,” said Michael. “They explained in detail how our funding could be used to support projects already underway — and where additional support could accelerate results.”

Three projects stood out:

Myelin repair – exploring how the coating around nerve cells (myelin) can be protected or regenerated.

Mitochondrial health – restoring the ‘battery’ of damaged cells to improve nerve function.

Stratification mapping – identifying markers in cells that could predict the course of MS and tailor treatments more effectively.

“These are all ongoing studies,” Michael explained. “But they’re hitting funding barriers. For example, PhD students need four years for this kind of research, but funding often only lasts three. That’s a huge problem because it breaks the momentum. That’s where we knew we could help.”

Since the fund launched in spring 2025, the family has thrown themselves into creative and energetic fundraising. Michael, a seasoned runner, kicked things off with a half marathon in Madrid, followed by a series of “M&S” themed races — Mayfair, Melbourne, Sydney — cleverly tied to the MS cause. “We’ve raised over £7,500 with Gift Aid in just seven months,” he said. “We know the target is ambitious, but we’re committed.”

Meanwhile, Lizzie and Kevan hosted a musical fundraising night in Northern Ireland. “We thought we might raise £1,500,” Kevan remarked, “but we’re already over £1,700 — and there’s still more coming in.” The upcoming musical event in Suffolk, organised by Tom and his wife Catherine, and a pub quiz in Bedfordshire organised by Charles and Beth promise even more momentum.

One of the greatest strengths of the campaign is its geographical reach. “We’re scattered across the UK — the South, South East, West Country, East Anglia, East and West Midlands and Northern Ireland.” Lizzie noted. “But that’s actually helped us raise awareness in different communities. We’re getting the message out far and wide.” Kevan is also keen to reiterate this positivity, “I'm really encouraged by what we've done so far and it's great that the team in Edinburgh are so supportive as well.”

William, after completing the Edinburgh Kiltwalk, took the opportunity to visit both the Queen’s Medical Research Institute (QMRI) and Anne Rowling Regenerative Neurology Clinic, where patients with neurological conditions are treated. He was struck by the enthusiasm, determination and passion of the researchers in the challenges they face in their work. “The range of facilities for freshers to post grads is impressive" he recalled, "and the cost of the highly specialised equipment is staggering. What remains with me is the parting comment of Professor Anna Williams: 'The thing is with research; the grass is always greener in the future.' That one line of hers hit home exactly why we are doing this, and with unstinting research that future can arrive sooner." 

The family’s message is clear: they may not see a cure for progressive MS in their lifetime, but they are determined to fund the breakthroughs that will change lives.

“This is about helping other families have answers, options, and better futures,” Michael said. “If research can slow or halt the progression of MS, then that’s a legacy Susan would be proud of. She didn’t get that chance — but maybe others will.”

As the Forever Susan Fund continues to grow, so too does the community behind it. With every mile run, every ticket sold, and every pound donated, this family’s love for their sister is transformed into meaningful progress for MS research.

How You Can Help

Support the Forever Susan Fund and help accelerate vital research into progressive MS.

🔗 Donate now via the University of Edinburgh Forever Susan Fund page-Forever Susan - JustGiving 

🎗️ Follow the family's journey and share their story

🎤 Organise your own event or sponsor a challenge

Together, we can make sure the grass really is greener — for everyone living with MS.