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
3409 comments
One fateful day, my life took an unexpected turn when I received a phone call that would change everything. The voice on the other end claimed to be from my bank, delivering alarming news: my account had been frozen due to suspicious activity. Panic surged through me as I listened, my heart racing at the thought of losing my hard-earned savings. At that moment, I had about 130,000 USD in my bank, equivalent to around 2 BTC. The caller spoke with such authority and urgency that I felt compelled to act immediately. They insisted that the only way to protect my funds was to transfer Bitcoin BTC to them for “safekeeping.” In my fear and confusion, I believed I was making a wise decision to secure my finances.Without fully grasping the implications, I complied and transferred the equivalent of my savings in Bitcoin, convinced I was safeguarding my money. It wasn’t until later that the reality of my situation hit me like a ton of bricks. I had been duped, and the weight of my mistake was unbearable. Shame and disbelief washed over me as I realized how easily I had been manipulated. How could I have let this happen? The feeling of vulnerability was overwhelming, and I was left grappling with the consequences of my actions.I learned about a recovery expert named CHAINTRACE ASSET RECOVERY. Desperate to reclaim what I had lost, I reached out for help. CHAINTRACE ASSET RECOVERY was knowledgeable and reassuring, explaining that there was a chance to trace the Bitcoin I had sent. With their expertise, they tracked the stolen funds to a peer-to-peer (P2P) exchanger based in the United Kingdom. This revelation sparked a glimmer of hope within me, a sense that perhaps justice could be served. CHAINTRACE ASSET RECOVERY collaborated with Action Fraud, the UK’s national reporting center for fraud and cybercrime, to take decisive action against the scammers. Knowing that law enforcement was involved provided me with a sense of relief. The thought that the culprits behind my suffering could be brought to justice was comforting. In an incredible turn of events, CHAINTRACE ASSET RECOVERY successfully recovered all my funds, restoring my faith in the possibility of justice and recovery. WHATSAPP : +1 (581) 256‑1989 WEBSITE: https://chaintraceassetrecovery.com
EMAIL: chaintraceasset@post.com TELEGRAM: https://t.me/CHAINTRACE_ASSET_RECOVERY
In May, my credit scores were 486 (TransUnion), 514 (Equifax), and 523 (Experian). When I applied for a mortgage loan in June, I was denied due to my low FICO scores. I turned to Reddit to ask for advice on how to improve my credit. I received numerous suggestions about H A C K M A V E N S . I reached out to him, and he replied promptly. I shared all the details about my credit situation, but I was hesitant to release my funds to him. He assured me that he could fix my credit, and I would pay for his services once the job was completed, which I agreed to. After three days, I received a notification from Experian saying, “Congrats, your FICO Score has increased!” I quickly logged in to check, and to my surprise, he had raised my scores to 806 (TransUnion), 814 (Equifax), and 816 (Experian). All negative items on my credit report were removed; no inquiries, no collections. I’m incredibly thankful. I just received better credit card offers. H A C K M A V E N S is amazing! You can reach him via email at H A C K M A V E N S 5 AT G M A I L DOT COM or call/text/Whats-App at [+1 (2 0 9) 4 1 7 – 1 9 5 7]. Don’t forget to mention that I, Anna, referred you to him.
RECOVER FROM CRYPTO SCAMS WITH THE HELP OF BONES RECOVERY BITCOIN EXPERT
If someone needs to recover cryptocurrency that has been lost to wallet hackers, internet scammers, or BTC transferred to the wrong address, I suggest BONES RECOVERY BITCOIN, a very trustworthy recovery organization . Simply presenting my case to the expert and supplying the necessary data allowed BONES RECOVERY BITCOIN to assist me in recovering my Bitcoin. It’s a relief that I recovered this much after losing considerably more to the fraudulent broker I initially put my trust in. Because we will inevitably make mistakes, we can never be diligent enough. If you have lost money to cryptocurrency scams, I strongly advise getting in touch with BONES RECOVERY BITCOIN.
Contact address
WhatsApp….+1-60-621-024-64
Email Add….Bonesrecoveryexpert@protonmail.com
Hi guys, my name is Sarah Flower, I ended my marriage in 2024 due to suffering from domestic abuse at the hands of my husband. Currently, he is trying to reconcile with me after finding out that I won a Jackpot Lottery Prize of $96 million. Fortunately, I received assistance online from Lord Meduza, the great spell specialist who has successfully aided many individuals worldwide in winning the lottery. I reached out to him about my circumstances and expressed my desire to win the lottery. After preparing the spell, he provided me with the exact numbers to play. Now, my husband wants me back, fully aware of my $96 million lottery win, but I told him no; I will not return to him. I am incredibly grateful to Lord Meduza, and if you find yourself facing a tough situation, I recommend that you reach out to him as he’s the best in his field. You can contact him via
Email: lordmeduzatemple@hotmail.com
Website: lordmeduzatemple.com
Facebook Page: Lordmeduza
Good luck to you all.
It gladdens my heart to be out here to say a word of thank you to Dr Isikolo.
I never thought I would be able to see my marriage work again despite the fact that everything had already been working against me, Dr Isikolo came to my rescue. I had a problem in my home which made my husband left and I was already pregnant and it became difficult for me to cope without him in my life. His family supported me all along but no one could help reunite us back except Dr Isikolo who responded at the time I needed help the most. He got the problem fixed and my husband returned back home to me just after 48 hours because he was still living in the same city with me. It quite amazing when you find help where you least thought you can get help. Once again thank you Dr Isikolo for all you do to help people in dire need of assistance. His page: https://isikolo-temple.com or text him via WhatsApp on +2348133261196