does anyone have any ideas on ways that we as a community can better advocate for more effective research and funding for trials into spinal cord injury? whenever i discuss a cure, or treatments i am often met with a lot of negativity and resistance - often told that i should focus my energy on accepting the condition and effective therapies are a pipe dream. i get shot down by people who have been injured longer than me with the same line 'every x years they say we are x years away from a treatment'.

i feel that there is a real disconnect between the researchers and the community. i read so many papers that show effectiveness in rats that end with the same sentence with something along the lines of 'looks promising but needs more research'. i don't know if its because there is something fundamentally wrong with the way we are doing research, i.e is a rat model appropriate? and are the clinical trial endpoints inappropriate or poorly defined, i.e the ASIA scale is not good enough at discerning improvements? i also feel like there is so much replication of research, just do a pubmed search on SCI and you'll find hundreds of similar papers with no attempt at translation.

maybe I'm writing this post in a state of desperation.before i was injured the thought of spinal cord injured people didn't even cross my mind, and I'd never even met one. maybe that is part of the problem too. if we could get SCI viral like the ALS ice bucket challenge was, or more in the spotlight like when Christopher reeve was still around that could translate into faster progress on research?

i know I'm not the only one, but I'm just tired with dealing of the secondary problems and the symptomatic fixes. and ill straight up have a breakdown if i get told 'everything is still possible but you;ll have to do it differently'. any thoughts and discussions are welcome.

thank you for listening to my ted talk.