Richard Green will leave the MNDA in late December after nearly six years. He said the move was prompted by a desire to move up to the next level in management.
‘There is a huge overlap between motor neurone disease and spinal muscular atrophy, so I have plenty to offer Jennifer Trust for Spinal Muscular Atrophy,' Green said.
The Jennifer Trust for Spinal Muscular Atrophy is the only British organisation dedicated to providing support, care, information and funding for research into the condition.
The hunt for Green's replacement at MNDA has already begun, and interviews are scheduled for mid-December.
The group is understood to be looking for a like-for-like replacement.
Over the past 18 months the MNDA estimates its consumer-facing and lobbying work has more than doubled awareness of the condition in the UK.
The MNDA is also creating three new roles - two regional campaign co-ordinators and a regional influencing manager - in its 12-strong comms team. The new comms director will report to MNDA chief executive Dr Kirstine Knox.