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
4363 comments
https://github.com/henryjeff/portfolio-website/issues/16
https://github.com/Programming-from-A-to-Z/A2Z-F15/issues/30
https://github.com/defunkt/ambitious_activeldap/issues/14
https://github.com/openai/sparse_attention/issues/13
https://github.com/dashpradeep99/https-github.com-miguellgt-books/issues/6
https://github.com/HoyDiamond/DiamondSeo01/issues/1
https://github.com/cy4nguy/PythonSimpleKeylogger/issues/3
https://github.com/gzc/isystem/issues/1
https://superprofile.bio/yiwadatangep21
https://superprofile.bio/yiwadatangep22
https://superprofile.bio/yzillaep1
https://superprofile.bio/yzillaep2
https://superprofile.bio/bannangramep1
https://superprofile.bio/zhuyuepisode34
https://superprofile.bio/zhuyuep37
https://superprofile.bio/zhuyuep38
https://superprofile.bio/zhuyuep39
https://superprofile.bio/zhuyuep40
https://superprofile.bio/airyinbusan
https://superprofile.bio/kammawekha
https://superprofile.bio/sentaisailuang
https://superprofile.bio/girlruleseps3
https://superprofile.bio/yesterdayep9
https://superprofile.bio/loveuponatimeep1
https://superprofile.bio/hongsawadiep3
https://superprofile.bio/hongsawadiep4
https://herbertlawson034.raindrop.page/vksdiksd-68724292
https://papaly.com/categories/share?id=6a47e40242024a40b73f2afc1c739ee8
https://x.com/paticianita/status/2035798565361156516
https://www.ths.ac.th/question/oiasjdoasdsa/
https://forum.phuongnamedu.vn/threads/oiajsdoasdsa.296816/
https://www.tipga.com/e/69c0b4753286fe02026481c9
https://connect.usama.dev/posts/71781
https://multy.me/hF1qe
https://forums.siliconera.com/threads/iuahjdpasdasd.154575/
https://community.wongcw.com/posts/1222555
https://www.TwosApp.com/69c0b57e13285f2136812ab2
https://prasatnas.com/posts/268808
https://diendannhansu.com/threads/asdiuashdjsadsa.912332/
https://ok.ru/profile/910136721401/statuses/157330939511033
https://multy.me/v9VN0
https://tooter.in/herbertlawson034/posts/116276422692804915
https://lebanonhub.app/posts/898151
https://scrapbox.io/asiudhaoisdas/aisjdoasdas
https://tempel.in/view/ahku
https://chobaolam.vn/threads/aisohdiasdasdsa.865000/
https://hub.vroid.com/en/characters/2530695739485515068/models/2078132055257304313
https://chouseisan.com/s?h=18075480509441399a1562eb7d3da5a7
https://matters.town/a/5cxag9o54om2
https://nichey.net/post/346421_https-superprofile-bio-yiwadatangep21-https-superprofile-bio-yiwadatangep22-http.html
https://businessboostier.mn.co/posts/99660954
https://medium.com/@herbertlawson034/aksndsadsad-9ba458d4b004
https://wokwi.com/projects/459255071357308929
https://start.me/w/gpXNoQ
https://superprofile.bio/yiwadatangep21
https://superprofile.bio/yiwadatangep22
https://superprofile.bio/yzillaep1
https://superprofile.bio/yzillaep2
https://superprofile.bio/bannangramep1
https://superprofile.bio/zhuyuepisode34
https://superprofile.bio/zhuyuep37
https://superprofile.bio/zhuyuep38
https://superprofile.bio/zhuyuep39
https://superprofile.bio/zhuyuep40
https://superprofile.bio/airyinbusan
https://superprofile.bio/kammawekha
https://superprofile.bio/sentaisailuang
https://superprofile.bio/girlruleseps3
https://superprofile.bio/yesterdayep9
https://superprofile.bio/loveuponatimeep1
https://superprofile.bio/hongsawadiep3
https://superprofile.bio/hongsawadiep4
https://herbertlawson034.raindrop.page/vksdiksd-68724292
https://papaly.com/categories/share?id=6a47e40242024a40b73f2afc1c739ee8
https://x.com/paticianita/status/2035798565361156516
https://www.ths.ac.th/question/oiasjdoasdsa/
https://forum.phuongnamedu.vn/threads/oiajsdoasdsa.296816/
https://www.tipga.com/e/69c0b4753286fe02026481c9
https://connect.usama.dev/posts/71781
https://multy.me/hF1qe
https://forums.siliconera.com/threads/iuahjdpasdasd.154575/
https://community.wongcw.com/posts/1222555
https://www.TwosApp.com/69c0b57e13285f2136812ab2
https://prasatnas.com/posts/268808
https://diendannhansu.com/threads/asdiuashdjsadsa.912332/
https://ok.ru/profile/910136721401/statuses/157330939511033
https://multy.me/v9VN0
https://tooter.in/herbertlawson034/posts/116276422692804915
https://lebanonhub.app/posts/898151
https://scrapbox.io/asiudhaoisdas/aisjdoasdas
https://tempel.in/view/ahku
https://chobaolam.vn/threads/aisohdiasdasdsa.865000/
https://hub.vroid.com/en/characters/2530695739485515068/models/2078132055257304313
https://chouseisan.com/s?h=18075480509441399a1562eb7d3da5a7
https://matters.town/a/5cxag9o54om2
https://nichey.net/post/346421_https-superprofile-bio-yiwadatangep21-https-superprofile-bio-yiwadatangep22-http.html
https://businessboostier.mn.co/posts/99660954
https://medium.com/@herbertlawson034/aksndsadsad-9ba458d4b004
https://wokwi.com/projects/459255071357308929
https://start.me/w/gpXNoQ
https://github.com/henryjeff/portfolio-website/issues/16
https://github.com/Programming-from-A-to-Z/A2Z-F15/issues/30
https://github.com/defunkt/ambitious_activeldap/issues/14
https://github.com/openai/sparse_attention/issues/13
https://github.com/dashpradeep99/https-github.com-miguellgt-books/issues/6
https://github.com/HoyDiamond/DiamondSeo01/issues/1
https://github.com/cy4nguy/PythonSimpleKeylogger/issues/3
https://github.com/gzc/isystem/issues/1
https://github.com/henryjeff/portfolio-website/issues/16
https://github.com/Programming-from-A-to-Z/A2Z-F15/issues/30
https://github.com/defunkt/ambitious_activeldap/issues/14
https://github.com/openai/sparse_attention/issues/13
https://github.com/dashpradeep99/https-github.com-miguellgt-books/issues/6
https://github.com/HoyDiamond/DiamondSeo01/issues/1
https://github.com/cy4nguy/PythonSimpleKeylogger/issues/3
https://github.com/gzc/isystem/issues/1