On 19 November 2025, the Huntington’s Disease Association hosted a landmark event at the Houses of Parliament, bringing together people affected by Huntington’s disease (HD), their families, carers, clinicians, and researchers. The aim was to engage Members of Parliament in meaningful discussions about the challenges posed by this rare, inherited neurodegenerative condition.
Among the attendees was Jemma Tann, Nottingham CityCare's Huntington’s Disease Specialist Nurse, who plays a vital role in supporting patients and families across Nottinghamshire. Jemma’s presence highlighted the importance of specialist services in improving quality of life for those living with HD.
A central theme of the event was the urgent need for Government, NHS, and regulatory bodies to ensure that any future treatments for Huntington’s disease are made available without unnecessary delays. Delegates heard updates on research progress, including promising early results from the AMT-130 gene therapy trial, which has shown approximately a 75% reduction in disease progression among participants.
“It’s vital that when new treatments become available, patients can access them quickly,” said Jemma. “Families affected by Huntington’s disease have already faced so many challenges – timely access to care and innovation can make a huge difference.”
Huntington’s disease gradually affects movement, communication, swallowing, cognition, and mental health. Each child of a parent carrying the faulty gene has a 50% chance of inheriting it. Currently, there is no cure, and the condition remains life-limiting, making specialist support and advocacy essential.
“Part of my role is to help families navigate the complexities of this condition,” Jemma explained. “From emotional support to practical advice, we aim to make sure no one feels alone in this journey.”
The event provided an opportunity to share lived experiences, hear from carers, and connect with professionals dedicated to advancing care and research. For Jemma and the CityCare team, it was a chance to reaffirm their commitment to supporting individuals and families during what is often an incredibly challenging journey.
“Listening to personal stories at Parliament was powerful,” Jemma reflected. “It reminds us why advocacy and collaboration are so important – every voice matters in shaping better services.”
CityCare's Community Nuerology Service serves patients with Multiple Sclerosis, Parkinson’s disease, Huntington’s disease, Motor Neurone Disease and Epilepsy. However, this service covers all patients with diagnosed neurological conditions where the reason for the referral is based on the neurological condition and the patient’s needs are best met in a community setting.
Date published: 25 November 2025
