Huntington’s Disease: Beyond the clinic

Charlotte is a passionate, Huntington’s Disease Advocate and uses her personal story and experiences to spread awareness and hope across the HD community and beyond. She is 25 years old, from the North East of England and works full time for an NHS Mental Health Trust as a HR Officer. Her professional role sees her support our frontline staff, as they care for a range of patient groups. Charlotte is heavily involved in the community, an ambassador for the HD Youth Organisation Charity, supporting other young people across the world with HD. She also supports the Huntington’s Disease Association (HDA) with campaigns and has raised over £10,000 for the HDA over the past few years doing different challenges. Her positivity and tenacity contribute to her hope to continue supporting others and raise funds for effective treatments. Charlotte regularly shares her story online, to help others in her position feel less alone, connecting with young people and adults all over the world to offer a listening ear and somebody who really understands just how hard things can get.  She is a carer, currently caring for her mum in the middle stages of the disease and has experience of caring for her grandmother, from the start of her disease until the end of her life. Her caring role saw Charlotte work part-time in her nanas nursing home, during the height of the COVID pandemic, alongside her full-time NHS role dedicating herself to her family no matter what the obstacles. Charlotte also lives at 50/50 risk of HD and could develop symptoms at any time. She uses this to motivate her to take any opportunity to spread awareness and improve the lives of those impacted by HD. Charlotte’s unique view of carer, NHS professional, living at risk and advocacy gives her a well-rounded view of Huntington’s Disease.

Dr Nayana Lahiri is a Consultant in Clinical Genetics at St George’s Hospital in London.  Her first experience of working with patients and families affected by Huntington’s Disease was during her research fellowship at UCL Institute of Neurology under the supervision of Professor Sarah Tabrizi.  She established a close relationship with the participants of her clinical research project investigating biomarkers of disease onset and progression in those with early as well as premanifest HD with follow up over a 3 year period.  She also attended the Specialist HD clinic at the National Hospital for Neurology and Neurosurgery.  Since becoming a consultant in Clinical Genetics she has maintained a specialist interest in adult onset neurodegenerative disease, particularly HD.  She is leading the development of a new service for HD in SW London and Surrey and maintains a clinical research interest as the PI for the HD research portfolio at St. George’s.  She is the co-chair of the UK Neuro Predictive Testing Consortium which brings together clinicians from across the country for service evaluation and improving practise in predictive testing for this group of disorders.  She also leads 2 working groups of the European Huntington’s Disease Network as well as being a current trustee for the patient support group; the Huntington’s Disease Association.