Research updates

Project shines a beacon on HERVs and their role in ALS

The Association has awarded a small ‘top-up’ grant to the Lighthouse Project, a Phase 2 open label clinical trial investigating the tolerability and efficacy of the antiretroviral drug Triumeq in 40 patients with ALS. This study is supported by the MND Research Institute of Australia and Cure for MND. More than 60% of participants have already completed the study.

There is recent evidence to suggest that Human Endogenous Retroviruses (HERVs) may be involved in amyotrophic lateral sclerosis (ALS). HERV-K has been directly linked to motor neurone damage and has been found in the brain tissue of patients with ALS. ALS-like syndromes have been seen in patients with HIV, and several investigators have documented improvement of these symptoms using an antiretroviral therapy such as Triumeq.

As this project is open label, all participants will have been given Triumeq. To help make the findings more robust, The MND Association has funded a project to measure two biomarkers, P75 and neurofilament light-chain (NfL), in 20 patients who have completed the trial. P75 and NfL levels have been found to be higher in patients with ALS than in healthy controls. The levels of these biomarkers will be measured in blood and urine samples taken from participants at different times during the trial. These results will be analysed to see if Triumeq has had a positive effect.

You can read more about this on our blog.


The Hawking annual MND lecture

We are delighted to let you know that we have established an annual tradition into the RCN calendar: an open lecture about MND. We are honoured that Professor Hawking has given his name to these events.

“I am delighted to give my backing to the establishment of ‘The Hawking Annual MND Lecture’.  I commend the Royal College of Nursing and the Motor Neurone Disease Association for creating this permanent fixture in the RCN calendar. I hope that in this, and future years, the lecture generates improved outcomes for people living with MND” – Professor Stephen Hawking CH CBE 

Each lecture will be a prestigious event, delivered by experts in their chosen fields. The first annual lecture will be held on the evening of 22 November, and focus on quality of life. Professor Carolyn Young from the Walton Centre will present an explanation of the groundbreaking TONiC study. The TONiC study is examining the factors that influence quality of life in patients with MND and other neurological conditions. It is one of the largest studies on quality of life in neurological conditions ever performed in the world. If you are interested in attending, or would like to invite health and social care professionals in your area to, you can find details about it here.

The Research Development team be reached by phone 01604 611 880 or by email on If you’d like to chat about any of these articles, please get in touch.

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