NSCISC Public Download Request 2021 – Spinal cord data
Yuying Chen, Sarah Banasiewicz,
It is a rather long story, but I will try to give you a sense of it.
When I was working with USAID and the US State Department to set up the Famine Early Warning System from 1986-1988, my younger brother Jeff was living nearby. He broke his neck at C2 and was completely paralyzed and on a respirator for about 18 months before he died. I have worked on brain-computer interfaces, robotics, voice controlled systems, AI systems much of my life. So I intensified my efforts in those fields, but too late to help him.
About 10 years ago, I wrote three hard science fiction books, and they first one was a lot about the sad things that happened when Jeff was in a coma, when he woke up and could not speak, when we tried to find ways for him to control computers.
About 3 years ago, I had that first book translated into Bengali (Bangla) by a young woman in Dhaka Bangladesh. Because of covid we put printing on hold. She married about this time two years ago, and before three weeks, her new husband broke his neck at C4, so completely paralyzed but not on a respirator. I did not hear about it for several months, and coincidentally very near Jeff’s birthday, Shahina wrote and asked for help. So I spent many hundreds of hours the last two years going over spinal cord injury, all the technologies, and issues related to paralysis in developing countries and in the world.
I work almost exclusively on global and systemic issues. 23 Jul 2023 was the 25th Anniversary of the Internet Foundation that I started in 1998 after the original Internet Foundation was cancelled for US political reasons. For 25 years, ever single day, with few exceptions, I ask “What would it take to gather and organize all the information and groups working on “spinal cord injury” and similar global issues and opportunities. “climate change” “sustainable practices” “open methods” “distributed computing” Roughly 15,000 topics in depth in the last 25 years.
So I was simply looking at “spinal cord injury” data, groups, models, methods, technologies, scientific technology engineering mathematics computing finance governance papers – working on that topic in the world. There is value in gathering and indexing “all that is written or mentioned or linked” on the internet to a given topic. It is larger and more complete than any one group can do, and has to be open complete and accessible to be of value.
My education was mostly quantum chemistry, electrodynamics, statistical mechanics and thermodynamics, orbital mechanics, gravitational potential models and calibration, detection of dynamic gravitational fields and the like. But I worked mostly with state, federal and international agencies on global and systemic issues. It is something I am very good at, and it seems to have helped in international development and a few fields.
I pretty much never publish things. For serious problems I try to find groups who are doing good work and help them to improve their methods. Setting up FEWS.net was like that. That is a multimillion dollar project that is supposed to monitor the world for the potential for famine, map out the pathways and then let others intervene to stop or prevent it. That is NOT impossible, and turns out it is not even that difficult – if one focuses on data, formats, sharing, collaboration, goals and purposes.
Shamim, Shahina’s husband, died at first of July. You might be able to search for “Shamim” “Shahina” “blog” and find them on YouTube. I was finding groups to design AI assisted interfaces and AI assisted research and development to accelerate progress in spinal cord injury globally and in paralysis as well. And since it is much “assisted living” many more tens of millions could benefit from that kind of new global industry and services.
I am not sure if I will do anything with spinal cord injury or paralysis or not. When Shamim died I was a bit relieved and not sure what to think. My brothers death was one of the most painful periods of my life. I was the closest family so I was involved through the whole process. I studied neural nets and artificial intelligence for more than 55 years. One might say, “Am I supposed to do something or not?”
My current work is on “rewrite the Internet” so the search engines and AIs can help in its indexing and use. There are about 2 billion human children between 4 and 24 who are learning for the first time. About 5 Billion humans with some access to the Internet. And using “all human knowledge” easily and efficiently can save billions of human years of searching and learning.
When I worked at USAID setting up their central Economic and Social Database and promoting integrated planning, modeling and evaluation for all US agencies working internationally and international agencies working in all countries, I was working for Georgetown University Center for Population Research but paid as a government employee, GS 14 Senior Mathematical Statistician. I have a knack for getting to the core of issues, which is why I have tried to understand the Internet’s role in global issues and the groups who work on them.
Hope that explains a bit. I doubt I will write any papers. I make a few video presentations and mostly write recommendations and reviews for private feedback to groups.
Looking at your site, my first recommendation is get all the information out of PDFs and put the content into real formats for working and building things. Equations, datasets, models, diagrams, circuits, devices, plans. Yesterday I was going over all the formats for sharing the GPT large lanague models – they are not standard or compatible now, and there is need to verify and audit those “AI” behaviors, decisions and actions.
Richard Collins, The Internet Foundation
