We have been busy in January! Alongside our many Doddie Aid activities, we organised and held two Foundation events in Westminster and Holyrood for members of both Parliaments. Aimed at raising awareness of motor neuron disease (MND) and My Name’5 Doddie Foundation, the events sought to inform, educate and build important relationships. 

The first was a three-day exhibition at the Scottish Parliament, sponsored by Rachael Hamilton MSP, where we met scores of MSPs who were very receptive to us and our mission. We outlined the research we are currently funding and contributing to, and encouraged the MSPs to sign up to Doddie Aid. We also had one-to-one meetings with the First Minister, the Cabinet Secretary for Health and Social Care, and others, as part of our longer-term goal to ensure MND research is kept front of mind.

The second event was in Westminster where we hosted an evening with MPs and Lords, again focusing on awareness and education. John Lamont MP sponsored the event and we arranged for Professor Ammar Al-Chalabi from Kings College London to present some slides on the disease, the science, the national research effort and the important role our Foundation plays in this area. Our CEO, Nicola Roseman, presented on the Foundation, and the ex-England and British Lion, Phil Vickery, gave a very heartfelt talk on his friend Doddie and the legacy he has left us. We were grateful to those living with MND who also attended to give first hand experiences of the brutality of MND. The engagement with around 40 MPs, from all parties, was of a very high quality and we have arranged to follow up with many of these important policy makers.

Members of both the Scottish Parliament and the UK Parliament are important stakeholders who carry influence and can work with us to help drive forward priorities for the MND community. It was encouraging to see so much support at our two events, which were the first of their kind for the Foundation, and we have many follow up actions as a result.

Sean McGrath

Head of Medical Affairs at My Name'5 Doddie Foundation

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