RHN continues its endeavour to improve standards of care to those affected with Huntington’s disease
The Huntington’s disease community is entering a new chapter which is one that is filled with hope, momentum and connection. This past year has brought scientific progress, political attention and meaningful community engagement, all working together to improve the lives of people affected by the condition.
The Royal Hospital for Neuro-disability (RHN) has been proud to stand alongside families, researchers and advocates during this time of change, contributing its own expertise and compassion to a national movement for better care and a brighter future.
In November 2025, the Huntington’s Disease Association brought this message directly to Parliament. RHN was represented by Lead Clinical Speech and Language Therapist Erin Probert who shared how valuable it was to hear directly from families about their experiences advocating for loved ones living with Huntington’s disease and to learn more about the recent developments in gene therapy research. Erin expressed her gratitude for being invited and reflected on the importance of ensuring that while scientific progress is encouraging, people with Huntington’s disease and their families still require comprehensive compassionate care and support.
Hope for the future was a powerful theme at the Huntington’s Disease Association’s parliamentary reception at Westminster. The event brought together clinicians, politicians, families and charities to highlight the realities of living with Huntington’s disease in the UK today, and the urgent need for fair, consistent services that are ready for the treatments of the future.
Researchers Professor Sarah Tabrizi and Professor Ed Wild at University College London announced early findings from AMT-130, a one-off gene therapy designed to reduce the harmful protein that causes Huntington’s disease. Early results showed significantly slower disease progression in participants receiving the higher dose, offering fresh hope while recognising that further research is needed and the treatment remains some way from being available.
While scientific and political progress made headlines, the RHN was proud to contribute to the heart of the Huntington’s community with one of their values – seeing the Whole person.
At the HDA Annual Community Conference in Crewe, Katheryn Merrison (Occupational Therapist) and Memory Maphosa (Ward Manager, Goodman House) represented the RHN’s Huntington’s Disease Service with warmth, compassion and expertise.
The conference brought together:
• Families living with Huntington’s disease
• Healthcare professionals and researchers
• Young people and carers
• Community volunteers and support groups
Across the weekend of the 01 November – attendees shared stories, learned from experts, explored what good care looks like and supported one another through workshops, discussions and social gatherings. The atmosphere was one of solidarity, strength and understanding.
Katheryn and Memory exchanged insights with colleagues from across the UK, showcased the RHN’s person-centred, multidisciplinary approach and shared practical knowledge on supporting people with complex neuro-disabilities. Their presence helped connect RHN’s everyday work with the lived experiences of the wider HD community
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Our Neuro – Behavioural matron Lizel Muyo shared:
“At RHN, this moment of progress only matters if it’s felt by the individual living with Huntington’s every day. Our role is to turn hope into practical, compassionate care, supporting people to live with dignity, connection and purpose, even as the condition progresses”
Together, we are moving forward
The combination of scientific discovery, political recognition and community connection marks an important moment for everyone affected by Huntington’s disease.
The RHN remains committed to standing beside the Huntington’s community today and in the hopeful years ahead.
Press Contact
Communications Team
Royal Hospital for Neuro-disability
[email protected]
www.rhn.org.uk