Hello everyone,

This post is a bit of a different one for me - but a cause I now feel it is only right to promote.

In April 2026, I will be running the Manchester Marathon as part of team MNDA (Motor Neurone Disease Association). I would really like to use this opportunity to spread awareness.

Early this year Rohan’s mum, Tracy, received a really hard diagnosis of Motor Neurone Disease. This has, and will continue to affect her mobility and quality of life over the coming years. MND is a terminal diagnosis currently with no cure and no treatment *see next paragraph. On average, a patient diagnosed with MND will have less than 2 years to live.

Recently we have learned that Tracy has a genetic mutation (the SOD-1 gene) which affects only 2% of cases, and is a likely trigger for development of MND. Whilst this is understandably very worrying for their family, it does come with a hint of hope. The variant of MND caused by this mutation is the only variant where treatment (Torfesen) has proven effective in slowing the development of MND.

The catch to this good news is that whilst the drug is provided free to the NHS, they do not have the resources to administer it and therefore it is uncertain whether Tracy will ever be able to receive the drug.

If you have made it this far, thank you. I have two requests. One of which is FREE and takes two minutes:

- Please sign this petition to make Torfesen available: https://www.mndassociation.org/get-involved/campaigning/take-action/tofersen-petition Tofersen in the UK: our Prescribe Life campaign. The official campaign has been handed to the department of Health and Social Care, but any additional support only reinforces the message.

- If you are able, please donate to my fundraising campaign for the MNDA: https://www.justgiving.com/page/ellensmndamarathon?utm_medium=FA&utm_source=CL

The MNDA have already been supporting Tracy - providing services such as voice banking, and assistance to make life more comfortable. We really appreciate their work.

Thank you for supporting us,

Ellen x

Motor Neurone Disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

Although there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.

We need your support.

£120 could provide an overbed table, making it easier for someone with MND to eat, drink and read safely and comfortably in bed

£280 could fund the coordination of care for someone with MND at a Care Centre for a year

£500 could provide a tablet device with specialist communication software, allowing someone to communicate with loved ones