Help me fight Motor Neurone Disease

**UPDATE - August 2024 **

Thanks to so many peoples’ generous donations, this Fundraiser completely smashed its target. Thank you all so much.

As a result, we’re now able to afford access to several experimental therapies, which wouldn’t have been possible without you.

Now, I’m switching focus to fundraising for a cure to MND and will close this site for future donations. You guys have done more than enough for me.

If you’d like to join me on the wider fight against MND, to help find affected treatments and ultimately a cure for this devastating disease, please go to the Fundraising page on my blog site to find out more:

www.onethousanddays.co.uk

***

Hi everyone, I'm Simon. I'm 41 years old and live near Bath, with my wonderful wife Ria and our 5-year-old son.

In June 2023 I received a devastating diagnosis - and I really need your help to fight it.

Video link - My MND Story

Motor Neurone Disease is a rapidly progressing neurodegenerative disorder that destroys the connections between your brain and your muscles. It leaves people paralysed; unable to move their limbs, unable to talk and unable to swallow food or water. There is currently no cure, but the latest clinical trials are showing promise.

It rarely effects your cognition or awareness, leaving you fully switched on but trapped inside a failing body.

Ultimately, it paralyses the diaphragm leaving you unable to breathe. Life expectancy is typically 2-3 years from diagnosis (about 1,000 days) but can vary greatly from patient to patient. Quality of life in the later stages is... pretty rough.

We're determined to fight this disease - to do anything we can to slow it down until more effective treatments are found. It's an expensive condition to live with, requiring a vast array of equipment and adaptations to help me live.

Anything you can donate is gratefully received, and will go towards:

• Major alterations to our house, making it level access, adding a wetroom, etc.

• Stem cell therapy in Europe - a potential new treatment option

• Other emerging treatments that look promising, including specialised MND clinics in the USA

• A wheelchair accessible car

• To supplement our income, which has taken a big hit since I stopped working

If I wobble off this mortal coil before the funds are spent, everything left will go towards an education fund for our son's future.

I've created an online blog to write about my experience and the ongoing fight against MND. Feel free to visit at www.onethousanddays.co.uk

Thank you so much for anything you can give.

Take care of each other,

Simon

PS - Some of my friends and my wonderful brother are also raising money for the MND Association by cycling a crazy distance as part of Ride London 2024. The MND Association funds clinical research into more effective treatments and support MND patients and their families. I'd be just as thrilled if you sponsored this instead of my GoFundMe project.

Here's the link: https://onethousanddays.co.uk/link-to-the-mnd-association-fundraiser/