An Islander whose two young daughters both have a rare genetic condition affecting their eyesight says plans for a major new medical research centre in Southampton have given her hope that future breakthroughs could improve their lives.
Carly Thorpe shared her family’s story as the University of Southampton stepped up its campaign to raise the remaining funds for its proposed £100 million Institute for Medical Innovation (IMI), which will focus research into cancer, dementia, sight loss, infection, and respiratory and allergic conditions.
The event, held at La Mare Wine Estate, also saw His Excellency the Lieutenant-Governor, Vice Admiral Sir Jerry Kyd, publicly back the project, describing it as “a commitment to improving lives, advancing knowledge and delivering hope for future generations”.
Mrs Thorpe said both of her daughters, five-year-old Nevaeh and 18-month-old Novah have albinism, a condition which severely affects their eyesight.
Both girls are treated by specialists in Southampton and experience nystagmus – rapid, uncontrollable eye movements that can affect vision, depth perception, balance and coordination. They are also unable to fully open their eyes in bright sunlight.
Novah additionally has no fovea and suffers from astigmatism, leaving her vision even more impaired.
“I felt at such a loss about how they would cope”
Speaking at the event, Mrs Thorpe said: “Both my girls have very poor eyesight, and with my youngest, it is unlikely that she will be able to read print.
“At first, I felt at such a loss about how they would cope, but hearing about the IMI, the research that can be done and the trials that could be conducted, I feel full of hope that there is now some possibility that their eyesight could be improved.
“I cannot advocate enough that we need more research into these conditions, so to hear that the new research centre in Southampton will focus on sight loss is incredibly encouraging for me as a parent.”
Last month, St Lawrence resident Carly Silvester described how a Southampton-developed asthma treatment transformed her life after years of waking in the night struggling to breathe.
Both stories highlight the close links between Jersey and Southampton, where thousands of Islanders receive specialist treatment each year.
According to the university, more than 7,000 referrals were made from Jersey to Southampton last year, with many patients travelling there for specialist cancer care.
The proposed Institute for Medical Innovation will be based at Southampton General Hospital and aims to accelerate the development of new treatments by bringing together clinicians, scientists, engineers and data specialists, using advances in artificial intelligence and computer analysis.
The university has committed £50 million towards the project and is seeking to raise the remaining £50 million through its largest-ever fundraising campaign.
A recent £1 million donation from Jersey philanthropists James and Mindy Vernon has helped take the total already secured to £61 million, including the university’s own investment.
“Every one of us has been touched in some way by illness”
Addressing supporters at the event, Sir Jerry said: “It’s abundantly clear that the University of Southampton is delivering research of the very highest international standard.
“I am excited by this next phase: the creation of the Institute for Medical Innovation. ‘Innovation’ means accelerating discovery, bringing together brilliant minds from different disciplines and, most importantly, translating scientific breakthroughs more rapidly into better treatments, earlier diagnoses and improved outcomes for patients.”
He added: “Every one of us has been touched in some way by illness, whether through family, friends or personal experience. We know the heartbreak, uncertainty and anguish that serious disease can bring.
“Yet there is also reason for optimism. Progress is possible when we invest in the people, facilities and research that enable us to confront these challenges head-on.”
The event also featured presentations from university researchers outlining how the new institute could transform medical research, while Aureole Music’s Sparky Parkies choir, run in partnership with Parkinson’s Jersey, performed for guests.
If completed, the Institute for Medical Innovation is expected to open in 2030 alongside the university’s existing Centre for Cancer Immunology.
