
Charlotte Conn
Huntington’s Disease Association Advocate
Speaker's biography
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.