New science discovery could lead to nasal spray treatment

Recent research from the University of Sheffield, led by Professor Guillaume Hautbergue, has discovered a potential new method of preventing nerve cell death in the most common genetic form of MND.

The findings could, with further studies, lead to the development of a potential therapy for C9orf72 MND, which affects around 5-10% of people with MND.

The mistake in the C9orf72 gene causes the genetic instructions to be wrong and leads to the formation of toxic proteins. The researchers found a way to reduce the production of these toxic proteins using a small drug-like compound. This potential treatment decreases the movement of the faulty instructions to the protein factory of the cell. This means that fewer toxic proteins are made and cause less damage to motor neurones. The researchers suggested that, in the future, this possible treatment could be administered by a nasal spray. Further research is needed to confirm the findings and test whether a nasal spray is possible.

Chair’s message

As I come to my first anniversary as Chair of the Association, I am pleased to be able to reflect on a year of significant progress.

Our new Chief Executive Tanya Curry and her team have quite literally hit the ground running with the magnificent effort of supporting more than 2,300 of

Professor Guillaume Hautbergue is also the lead researcher on a project funded through our partnership work with LifeArc. In new research, he is looking to further develop another way of targeting the C9orf72 gene mutation. It is hoped that this research will enable more testing of this therapy and lead to the potential gene therapy being tested in a clinical trial.

Find out more about this project at www.mndassociation.org/srfs1

Jim Marshall along with an overview of a record level of spending on research and care. We saw an unprecedented number of candidates standing for election to join our Board of Trustees. We know this presented a challenge to members, but we hope you will agree it was also a vote of confidence. Look out for an introduction to our new trustee in the autumn edition of ThumbPrint our runners at the Rob Burrows Leeds Marathon, one of a number of landmark events and activities which have continued to boost the profile of MND.

Earlier this month the Association hosted its 38th Annual General Meeting (AGM). A very positive financial position was reported by our Honorary Treasurer

As you know from our spring issue, we had hoped to hold our first in-person AGM, post pandemic, but in the end we made the decision for it to remain a virtual event for one more year. I understand the disappointment this may have caused but can assure you that with wider consultation of our members, we will bounce back with some exciting activities and events in 2024.

Finally, I’d like to thank everyone for their support in marking Global MND Awareness Day on 21 June. The challenge of working to rid the world of this most terrible of diseases continues but, with your continued support and enthusiasm, we have clear shoots of hope in sight.