10 February 2025 News
We are saddened to learn of the death of our trustee, Ed Cooke, less than two years after his diagnosis of MND.
Ed, a member of the MND Association’s Chiltern Branch, was elected to the Association’s Board of Trustees in 2024, bringing his extensive skills as a lawyer and his personal experiences of living with MND to the role. He quickly proved himself a devoted trustee who was well-liked and much-respected by all those who worked with him.
Ed’s desire to support the MND Association started following his MND diagnosis, when he found the information and support offered invaluable. He wanted to give back to the charity and felt passionately about being able to draw on his own experience of the disease to offer first-hand insight into the journey of someone living with MND.
His passion shone through in everything he did for the Association. He was incredibly generous with his time and, alongside membership of the People, Culture and Inclusion Committee and the Engagement and Income Generation Committee, he also dedicated time to a number of new and ongoing Association projects.
Usman Khan, Chair of the Board of Trustees at the MND Association, said: “Ed’s contribution to the Board was significant. He was a unique individual and able to connect with the Association and his new colleagues immediately with remarkable warmth and openness.
"His contribution as a trustee was immediate and substantial and, while he was with us for such a cruelly short period, he has left his mark in so many ways. On behalf of all the Trustees, we will deeply miss Ed and everything he brought to the role.”