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
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My name is Kárpáti Sebestyén. I’m 61 years old, a retired Hungarian medical doctor, and earlier this year, I went through one of the most difficult experiences of my life.
I was the victim of a carefully orchestrated investment scam that drained me of everything I had—$715,000, my entire life savings. It was more than just financial loss. It was shock, disbelief, and the overwhelming fear that everything I had worked for was gone forever.
Just when I thought there was no way out, I came across a company called SPYHOST. I was skeptical at first—after all, I had just been scammed—but something told me to give it a chance. And to my absolute amazement, they recovered every cent I lost within 48 hours.
It still feels unreal. In a matter of days, my despair turned into relief. Spyhost didn’t just recover my funds—they gave me back peace of mind, dignity, and a second chance at life.
If you’ve lost money to a crypto or digital asset scam, please don’t give up. There is hope. I can’t recommend Spyhost enough—they were a godsend when I needed it most.
You can reach them here:
Email:[Spyhost@cyberdude.com]
WhatsApp: +1 (228) 313‑3152
Website:[spyhost.wixsite.com/spyhost]
I don’t usually share personal stories like this, but if it helps even one person avoid what I went through—or gives someone the hope to fight for what they’ve lost—then it’s worth it.
Don’t lose hope. Help is out there.
My name is Kárpáti Sebestyén. I’m 61 years old, a retired Hungarian medical doctor, and earlier this year, I went through one of the most difficult experiences of my life.
I was the victim of a carefully orchestrated investment scam that drained me of everything I had—$715,000, my entire life savings. It was more than just financial loss. It was shock, disbelief, and the overwhelming fear that everything I had worked for was gone forever.
Just when I thought there was no way out, I came across a company called SPYHOST. I was skeptical at first—after all, I had just been scammed—but something told me to give it a chance. And to my absolute amazement, they recovered every cent I lost within 48 hours.
It still feels unreal. In a matter of days, my despair turned into relief. Spyhost didn’t just recover my funds—they gave me back peace of mind, dignity, and a second chance at life.
If you’ve lost money to a crypto or digital asset scam, please don’t give up. There is hope. I can’t recommend Spyhost enough—they were a godsend when I needed it most.
You can reach them here:
Email:[Spyhost@cyberdude.com]
WhatsApp: +1 (228) 313‑3152
Website:[spyhost.wixsite.com/spyhost]
I don’t usually share personal stories like this, but if it helps even one person avoid what I went through—or gives someone the hope to fight for what they’ve lost—then it’s worth it.
Don’t lose hope. Help is out there.
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