Staying away from home with late stage MND is an absolute mission. Specialist accommodation is massively rare so I stopped looking for accommodation that has everything I need a long time ago. Instead I find places that have enough space and hire or travel with all my equipment. To give you an idea my packing list for this trip had 76 items on it...
Of course I can't physically help to pack any of that, and trying to control too much of the process is a very fast path to massive frustration. However its not easy to let go when so much of that equipment is essential to keeping me alive and cared for, I need to have a lot of trust in my care team and thankfully I do.
Then of course there are the people who will physically push me around the London Marathon. Taking responsibility for my care at the same time. Not only do they have to be physically fit enough to comfortably run 26.2 miles, they have to monitor me and provide any interventions I may need. Distance running is traditionally a solo pursuit, taking on responsibility for me as well is a heroic effort in my view.
Then there are the people who organise the administrative side, the logistics and the publicity. Making sure all my equipment is where it needs to be, everyone has their accreditation, and that we raise some cash for research and care too.
In total that covers around 12 people. The vast majority of whom are unpaid. Those who are paid receive a fraction of what they deserve (that's a whole other blog post) and go above and beyond to help me a
ttempt these ridiculous challenges. Those 12 people are just the tip of the iceberg, my family, friends, trustees and of course all the amazing people who follow and support the charity all have my heartfelt gratitude. I don't really know how I've created this incredible support, or why so many people are willing to give up their time and energy to support me and the charity. It's beyond anything I hoped for or anticipated when we started Stand Against MND and I'm humbled by it.
It gives me the will to carry on, a purpose. Helps me maintain a positive attitude whilst being assaulted by the most brutal disease. Thank you. Every single one of you.
If you feel inspired to help us fund more vital research, you can donate here.
Thank you so much for reading.
Sam x
2090 comments
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I always believed cold wallets were the safest way to store crypto. That belief was shattered when I mistakenly reset my device and lost access to over $179,000 worth of Bitcoin and USDC. I had backed up the seed phrase, or so I thought, but during the reset, I realised the backup was incomplete. I couldn’t access my funds, and panic set in.
After days of trying to recover access on my own, I turned to forums and online resources. That’s when someone recommended Morphohack, a cyber recovery service specialising in blockchain forensics and crypto recovery. The team at Morphohack was calm and professional. They analysed my case and used specialised tools to trace my transactions and reconstruct the wallet environment. To my disbelief, they managed to recover access to my assets and $179,000 returned safe and secure.
It was a huge relief like getting a second chance. I’ve since doubled down on secure backups and proper key management. But if you ever face a loss like mine, don’t assume it’s permanent. Morphohack gave me hope when I had none, and they delivered results when no one else could. Their email. Morphohack@cyberservices. com
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