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
4112 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/dancingqueen
https://nangfakhadance2026.readme.io/
https://superprofile.bio/phramai
https://phramai2026.readme.io/
https://superprofile.bio/projecthailmary2026
https://projecthailmary2026.readme.io/
https://superprofile.bio/scarowthemovie2026
https://superprofile.bio/zhuyueps29
https://superprofile.bio/zhuyueps25
https://superprofile.bio/yesterdayep7
https://superprofile.bio/kularblenfaiep11
https://superprofile.bio/catforcashep9
https://superprofile.bio/peachlovereps9
https://superprofile.bio/foureveryou2ep11
https://superprofile.bio/thesunfromanotherstarep3
https://superprofile.bio/klinmaliep7
https://superprofile.bio/klinmaliep8
https://superprofile.bio/korakmanpakjaiep13
https://superprofile.bio/korakmanpakjaiep14
https://superprofile.bio/tawanrafaep4
https://superprofile.bio/langpritsnaep13
https://flipboard.com/herbertlawson/yadsndkas-o4hmm93ny https://papaly.com/categories/share?id=416c398b02b8496db2f1bd76fe5f50d9 https://x.com/paticianita/status/2033618941407617400 https://x.com/paticianita/status/2033426429183193167 https://x.com/paticianita/status/2033241749427257510 https://herbertlawson034.raindrop.page/poasdkijd-68477940 https://on.contra.com/QKFQ9z https://contra.com/community/0mNcVvpi https://www.ths.ac.th/question/oiajdoiasdasds/ https://forum.phuongnamedu.vn/threads/oausdiadsasd.287722/ https://www.tipga.com/e/69b8d3df3286fe2c96783492 https://connect.usama.dev/posts/71304 https://multy.me/oj8GE https://multy.me/cuHB1 https://ok.ru/profile/910136721401/statuses/157323480465657 https://diendannhansu.com/threads/oaisjidusadsa.909492/ https://prasatnas.com/posts/268300 https://www.TwosApp.com/69b8d4b25771e51e7818ede1 https://forums.siliconera.com/threads/oiasjdoisadas.153455/ https://bsky.app/profile/herbertlawson034.bsky.social/post/3mha4drgbxc27 https://bsky.app/profile/herbertlawson034.bsky.social/post/3mha4ct2icc27 https://mastodon.social/roatghuang/116242580892789775
https://community.wongcw.com/posts/1220639
https://tooter.in/herbertlawson034/posts/116242593144639509
https://lebanonhub.app/posts/888095
https://hub.vroid.com/en/characters/1895760167908385244/models/1897297767958830020
https://chobaolam.vn/threads/iaoisjdaisjdisad.863084/
https://tempel.in/view/MYK0E
https://scrapbox.io/oiasjdoasds/oasjdosadasd
https://chouseisan.com/s?h=d5d136d5539f4abdbedcaa8dca84d31d
https://nichey.net/post/344621_https-superprofile-bio-dancingqueen-https-nangfakhadance2026-readme-io-https-sup.html
https://matters.town/a/m11lkf1an14g
https://businessboostier.mn.co/posts/99408081
https://wokwi.com/projects/458715076912464897
https://hackmd.io/0hu9d8Z2TC2u2bktU8K3Pw/r1Q-lwLqbg https://medium.com/herbertlawson034/iuajsdoiasdasd-92021153be4f
https://magic.ly/ikandksadasd/bvsdhisddsdfsdf
https://start.me/w/864yGD
https://mez.ink/dia168
https://x.com/NP5230322012050/status/2031600322167320601?s=20
https://forum.issabel.org/u/Diamond168lnw
https://mastodon.social/@Diamond471/116209006212573492
https://mez.ink/dia168
https://x.com/NP5230322012050/status/2031600663432671518?s=20
https://forum.issabel.org/u/Diamond168lnw
https://mastodon.social/@Diamond471/116209013315331002
https://mez.ink/dia168
https://x.com/NP5230322012050/status/2031600663432671518?s=20
https://forum.issabel.org/u/Diamond168lnw
https://mastodon.social/@Diamond471/116209013315331002