top of page

A Breakthrough in Huntington’s Disease Brings New Hope


ree

For generations, families affected by Huntington’s disease have lived under a persistent shadow, a genetic coin flip that too often ends with a slow, devastating decline. But for the first time, that shadow seems to be lifting.

Last month, researchers announced a major breakthrough: a treatment that can slow the progression of Huntington’s disease by up to 75%. For a condition once considered unstoppable, this is nothing short of extraordinary.

For many, including 32-year-old Jersey local Laura Douglas, the news was life-changing.

A Future Re-Imagined

Laura grew up watching Huntington’s disease take her mother, her aunt, and her grandmother. With a 50/50 chance of inheriting the condition herself, she made the painful decision not to undergo genetic testing. “There was no treatment,” she said. “So knowing wouldn’t have helped.”

When she heard about the breakthrough, all those years of fear came rushing forward.

“It was totally overwhelming. I just spent the afternoon crying,” Laura said. “I’ve always had a big cloud over my future, and this news feels like it’s lifted. There’s a bit of light now — something that wasn’t there before.”

Living with the possibility of Huntington’s can be emotionally suffocating. For Laura, hope had been a distant abstraction. Now it feels real.

Living With Huntington’s: “It’s Been Difficult”

For others, the battle is already personal. Ashley Delgado, 36, inherited Huntington’s from her father, Antonio. She is in the early stages, and the disease has already changed her daily life.

“It’s been difficult in the last year or so,” Ashley shared. “I’ve lost a lot of my independence.”

Yet even as she navigates enormous challenges, she remains optimistic, especially because the breakthrough is happening at the very hospital where she receives her care.

“It’s super exciting and much overdue,” she said.

Ashley has become a passionate advocate. In 2024, she even ran the London Marathon to raise money for the Huntington’s Disease Association, the charity that supported her family during her father’s illness and now supports her.

A Scientific Milestone: Gene Therapy Delivered in the Brain

The new treatment is a form of gene therapy, administered through 12–18 hours of intricate brain surgery. Instead of simply addressing symptoms, this therapy targets the root cause: the faulty gene that produces toxic proteins in the brain.

While still in clinical trial stages, the early results are staggering. A 75% reduction in disease progression could mean decades of quality life regained for future patients.

But experts emphasise caution.

Cath Stanley, CEO of the Huntington’s Disease Association, explained:

“A 75% reduction is incredible — but there’s a long journey from clinical trial to approved treatment. And for some people, this treatment may never be an option.”

Her message is clear: celebrate the progress, but stay grounded. And for families wrestling with fear or uncertainty, support is available now, not just in the future.

What This Breakthrough Means for Jersey

Local health leaders are watching closely. Simon West, Medical Director for Health and Care Jersey, confirmed that the island is preparing a new Treatment and Interventions Prioritisation Policy to assess which cutting-edge treatments will be accessible to islanders.

For people like Laura and Ashley, this matters. Access can be the difference between a life overshadowed by fear and one illuminated by possibility.

A Turning Point — and a Beginning

For decades, Huntington’s disease has felt like a closed chapter, a tragic narrative written into the DNA of families, generation after generation.

But now, the story is changing.

Laura describes the breakthrough as light after years of darkness. Ashley sees it as long-awaited hope for herself and for others already living with the disease. Their journeys, one marked by uncertainty, the other by daily resilience, reveal what this scientific progress truly means.

This isn't just a medical milestone. It’s a human one.

A new chapter is beginning for families who have waited far too long for hope.

Comments


bottom of page