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Lesley Jones: In Memoriam

In June of this year we lost Lesley Jones, our friend and much valued colleague in the quest to find treatments for Huntington’s disease (HD). Lesley passed away following a short illness which she bore with characteristic stoicism and pragmatism. Her illness came as a great shock to everyone who knew her and particularly to her husband, friend and collaborator, Peter Holmans, also an HD researcher. Indeed, Lesley was apparently well and active even in the spring of this year and, as recently as March 2022, Lesley and Peter completed a 20 km walk along the Wales Coastal Path.

Lesley grew up in in the Northwest of England, not far from Liverpool (accounting perhaps for at least some of her no-nonsense approach to life and her sense of humour!), but spent her professional life in Wales, UK. She undertook her first degree and PhD at Cardiff University and went on to spend the rest of her career there. She became a senior scientist and lecturer in Neuropsychiatric genetics in Cardiff and was appointed as Professor of Neuropsychiatric Genetics in 2012. Although Lesley started off working on several neurodegenerative diseases, she became increasingly focussed on HD for which she is now best known, perhaps influenced by Sir Professor Peter Harper (who also passed away only last year) with whom she worked closely for a time. Lesley was a much loved and respected figure in Cardiff. She was well known for her sharp intellect, good sense, and kindness, and particularly her careful attention to the needs of young scientists and strong support of women in science. She served in postgraduate educational roles for many years and very recently she was awarded the prestigious title of Fellow of the Learned Society of Wales, an honour which she sadly didn’t live to enjoy.

Lesley was a first rate scientist and made immense contributions to our understanding of HD at multiple levels. Her 2006 Hodges et al Regional and cellular gene expression changes in human Huntington’s disease Brain paper with Ruth Luthi Carter remains a critical paper in the field with over 800 citations [1]. Lesley worked on the cell biology, mouse behaviour and the genetics of HD. She pioneered our understanding of HD genetic modifiers and was the chair of the European Huntington’s disease network (EHDN) genetic modifier working group from its inception [2, 3]. The discovery of gene modifiers of HD has completely changed our understanding of the disease and is leading to the identification of new potential therapeutic targets which may eventually lead to new treatments for patients (summarised in Jones et al, Massey et al, and a JHD special edition which she curated with Vanessa Wheeler and Christopher Pearson [4–6]). As well as a being fully committed to (and fascinated by) the basic science, Lesley cared deeply about the patients and families. She was very much focused on translating science for patient benefit and, particularly in her later years, worked with a number of industry partners to try to advance potential \nobreak treatments. She always wanted to know about trials and was genuinely devastated for patients and families when the GENERATION HD1 trial failed. Lesley also made huge contributions to our understanding of Alzheimer’s genetics in collaboration with Peter Holmans and Julie Williams. Just recently, Sir John Hardy said ‘Lesley was the first person to say that glia are the first cells to go wrong in Alzheimer’s and we now know they are the key players in the cause of the disease’.

Many colleagues from all over the world have told us how much Lesley meant to them, and have remarked on her dedication to HD and her willingness to collaborate openly and generously. In the same way, Lesley was a loyal supporter of EHDN since its inception and served on many of its committees and working groups. She chaired the EHDN Scientific and Bioethics Advisory Committee (SBAC) from 2010-2012, she was lead facilitator of the Genetic Modifiers Working group for many years and a member of the Biomarker working group. She chaired the program committee for the 2018 EHDN plenary meeting in Vienna and delivered a really excellent conference – the last one we enjoyed before lockdown. At the time of her death, Lesley was a member of the EHDN Executive Committee, which she joined in 2018, and a core member of the EHDN Think Tank, which meets weekly. Lesley’s time in these positions was marked by energy and engagement. Despite her many and varied professional commitments, she was generous in the time and energy that she devoted to these activities. She was always well prepared, gave serious thought to a wide range of scientific and management issues and gave excellent scientific advice. She was particularly engaged in the assessment and award of seed fund applications. This was something she cared about deeply, and she was particularly keen to ensure support for innovative ideas from young scientists. Indeed, something thing that embodied Lesley was her dedication to nurturing and training future generations, and the inspiration and leadership she showed in this area will be carried forward by all of Lesley’s trainees as a long-lasting legacy for the future. In fact, the energy and care she put into the seed fund over so many years was such that the EHDN Executive Committee has elected to rename these awards The Lesley Jones Seed Fund Awards. We hope that this gesture serves to honour Lesley’s commitment to EHDN, her passion for excellent and exciting science, and that it serves to inspire future generations of scientists working in this area.

Lesley was a warm, wonderful, kind human being but also an assertive and powerful woman in an excellent and exemplary way. She had a refreshing, “no-nonsense” approach to science and “said it how it was”! She was thoroughly honest, and able to take a clear and concise view of data and their interpretation. Those of you who knew her will have fond memories of shared meals and bottles of wine and will remember her quick wit and sense of fun. Lesley lived a full and active life – she loved walking and opera, was an avid reader and she spoke so fondly of her children and grandchildren and of all the things she and Peter were doing. Lesley will be enormously missed by the HD community, but we can also take inspiration from her down-to-earth approach to life, her generous support of colleagues and her unstinting endeavours to support the next generation of researchers. We should celebrate what an amazing woman she was and how lucky we were to have her as a colleague and friend for as long as we did. We can be confident that her legacy will continue to provide inspiration.



Hodges A , Strand AD , Aragaki AK , Kuhn A , Sengstag T , Hughes G , Elliston LA , Hartog C , Goldstein DR , Thu D , Hollingsworth ZR , Collin F , Synek B , Holmans PA , Young AB , Wexler NS , Delorenzi M , Kooperberg C , Augood SJ , Faull RL , Olson JM , Jones L , Luthi-Carter R ((2006) ) Regional and cellular gene expression changes in human Huntington’s disease brain, Hum Mol Genet 15: (6):965–77. doi: 10.1093/hmg/ddl013. Epub 2006 Feb 8. PMID: 16467349.


Bettencourt C , Hensman-Moss D , Flower M , Wiethoff S , Brice A , Goizet C , Stevanin G , Koutsis G , Karadima G , Panas M , Yescas-Gómez P , García-Velázquez LE , Alonso-Vilatela ME , Lima M , Raposo M , Traynor B , Sweeney M , Wood N , Giunti P ; SPATAX Network, Durr A , Holmans P , Houlden H , Tabrizi SJ , Jones L ((2016) ) DNA repairpathways underlie a common genetic mechanism modulating onset inpolyglutamine diseases, Ann Neurol 79: (6):983-90. doi: 10.1002/ana.24656. Epub 2016 May 6. PMID: 27044000; PMCID:PMC4914895.


Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium ((2015) ) Identification of Genetic Factors that Modify Clinical Onset of Huntington’s Disease, Cell 162: (3):516–26. doi: 10.1016/j.cell.2015.07.003. PMID: 26232222; PMCID: PMC4524551.


Jones L , Houlden H , Tabrizi SJ ((2017) ) DNA repair in the trinucleotide repeat disorders, Lancet Neurol 16: (1):88–96. doi: 10.1016/S1474-4422(16)30350-7. PMID: 27979358.


Massey TH , Jones L ((2018) ) The central role of DNA damage and repair in CAG repeat diseases, Dis Model Mech 11: (1):dmm031930. doi: 10.1242/dmm.031930. PMID: 29419417; PMCID: PMC5818082.


Jones L , Wheeler VC , Pearson CE ((2021) ) Special Issue: DNA Repair and Somatic Repeat Expansion in Huntington’s Disease, J Huntingtons Dis 10: (1):3–5. doi: 10.3233/JHD-219001. PMID: 33554921; PMCID: PMC7990429.