Our mission is to empower and enable patient & public involvement in motor neuron disorders research

An open letter to MND researchers

June 2021

Attached is a letter to MND researchers from a patient with motor neurone disease, which I invite you to take a few moments to read and consider.

The letter is written from a patient who has been a valued member of the SMND RAG until recently, when he took the difficult decision to step back from the group due to his deteriorating speech and finding it difficult to communicate.  The thing he really enjoyed as a member was having interactions with researchers and other members of the group, which was becoming increasingly difficult and frustrating for him, and he didn’t feel he would get the same enjoyment by providing written feedback.

When he got in touch to let me know he was stepping down, he included “a final thought to MND researchers”, which I found incredibly inspiring and motivating.  At the end of what had felt like a tough work day – it put things in perspective and reminded me what I love about my job, and made me want to give that bit more to do everything I can to drive research forwards …

The open letter is written to all MND researchers – a call-to-arms, if you like – to be shared far-and-wide.  I hope that you can take a few minutes to pause and consider how important your research is, and that his powerful words inspire and motivate you to drive your research forwards as far and as fast as you can.

Please do share it with your colleagues – clinical and lab-based MND researchers, technicians, admin, managers, all other support roles… we are all essential to making meaningful progress to translate into patient benefits.

Very best wishes, Stacy Young, Chair of the SMND RAG

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