3 ms·

If you’re not familiar with Matt Might, look into his work on the rare genetic disease that his son has. His story is really quite inspiring, and maybe there wi

by rsfern 5y ago

If you’re not familiar with Matt Might, look into his work on the rare genetic disease that his son has. His story is really quite inspiring, and maybe there will be a strategy that you can apply. Here’s a good post, he’s a prolific blogger: https://matt.might.net/articles/rare-disease-internet-matchmaking/ https://matt.might.net/articles/rare-disease-internet-matchm... (Edit: this is a bigger picture post detailing the whole process: https://matt.might.net/articles/my-sons-killer/ https://matt.might.net/articles/my-sons-killer/) Depending on the kind of research you are looking to get funding for, you might also look into an NIH SBIR grant or something. https://rarediseases.info.nih.gov/tips/pages/124/ https://rarediseases.info.nih.gov/tips/pages/124/

halukakin 5y ago
Thank you! Matt is a huge inspiration to all rare disease parents. I will read the NIH SBIR grant.
- gardenfelder 5y ago
  In relation to that story is this https://www.science.org/content/article/researchers-turn-volunteer-readers-speed-research-rare-genetic-disorder https://www.science.org/content/article/researchers-turn-vol... where the Su Lab enlisted crowd sourcing in an open source online platform to assist in reading large amounts of literature on NGLY1. Something similar might be possible here. At the same time, there are emerging platforms in the social network space which focus on structured conversations, Quests; in that case game mechanics and the social dynamics of guilds in MMOs come into play; I cannot say whether that would necessarily be of immediate value, but there are arguments for exploring that space as well.
- mattmight 5y ago
  Feel free to reach out. Happy to help. Also, I've put much of what I've learned online: https://bertrand.might.net/articles/algorithm-for-precision-medicine/ https://bertrand.might.net/articles/algorithm-for-precision-...
  - halukakin 5y ago
    Thank you Matt! Just so you know, "quickstart molecular biology" is my daily reading thanks to you.

by rsfern 5y ago

halukakin 5y ago

Thank you! Matt is a huge inspiration to all rare disease parents. I will read the NIH SBIR grant.

gardenfelder 5y ago
In relation to that story is this https://www.science.org/content/article/researchers-turn-volunteer-readers-speed-research-rare-genetic-disorder https://www.science.org/content/article/researchers-turn-vol... where the Su Lab enlisted crowd sourcing in an open source online platform to assist in reading large amounts of literature on NGLY1. Something similar might be possible here. At the same time, there are emerging platforms in the social network space which focus on structured conversations, Quests; in that case game mechanics and the social dynamics of guilds in MMOs come into play; I cannot say whether that would necessarily be of immediate value, but there are arguments for exploring that space as well.
mattmight 5y ago
Feel free to reach out. Happy to help. Also, I've put much of what I've learned online: https://bertrand.might.net/articles/algorithm-for-precision-medicine/ https://bertrand.might.net/articles/algorithm-for-precision-...
- halukakin 5y ago
  Thank you Matt! Just so you know, "quickstart molecular biology" is my daily reading thanks to you.