Free idea: a website where you enter the name of your disease/injury/condition/procedure and get shirts, stickers, signs, etc. with “NIH grant number X saved my life.”
Comments
Log in with your Bluesky account to leave a comment
I’m reading the documentation from NIH RePORTER and while it’s more than a “simple form,” it does boil down to “a simple form” from a UI perspective. It’s just an API call with the search criteria.
The downside? NIH RePORTER is maintained by the NIH.
Meaning such a site, if it became popular, could face rate limits, changing API parameters to make it de facto inaccessible, etc. So the app would be at the mercy of DOGE.
Likewise, making shirts, bumper stickers, etc would require a massive capital investment, BUT it could show what studies
were related to the search they enter. If a project amount is listed you could create some complicated calculations to add an additional feature to see how much they’ve personally paid toward that research. You can actually show a lot
A website could take the data you want to tell the story you want (“NIH has saved your life while costing you very, very little,” which is the truth!) more efficiently than the NIH’s website, but it’s all already available there (as a convoluted mess)
Grant victory over the powers of evil that have arisen and bless Ukraine with your gifts of liberty, peace, tranquility, and good fortune please help us we need your support and prayers always 🇺🇦🇺🇦🇺🇦❤️
Ooh, good idea. Or even just basic goods, like “the reason this mattress is not full of cancer causing chemicals is EPA regulation X and grants Y and Z”.
Alright - went into Figma and drew up an incredibly basic design based on what I think I can pull from the API. Minimalist, designed that way intentionally.
Assuming the API call is uncomplicated (should be), it actually is a simple build.
We need to do this for all of the orgs that have had their funding stripped and are necessary for Public and Environmental Health. 🩵 NIH, FDA, Public Education (my son had an IEP: SPED programs are a necessity for kiddos like mine who have dyslexia and ADD), Public Lands, EPA, etc
And everyone wears them (plus comparable ones for other agencies) in a parade / public demonstration that serves as a call to restore functioning government
I hope they do make it happen. I was all lined up for a clinical trial with a rare cancer. No pharma solution for it. Just surgery and radiation as my only option.
It happened to my mother first. When it was her turn, we believe it wasn't a cancer you could inherit. She had a lousy surgeon so I made sure I got the best surgeon. I have pretty decent insurance and the best primary care person one could hope to have. I'm okay for a few more years.
Chordoma is known as a one-in-a-million cancer. Inheriting it, my family might be the eleventh documented family. When I was first diagnosed, experts were really excited to have a really rare case in their office. Then RFKjr came along.
I have a rare disorder that impacts my day to day life. I've been on disability trying to get healthy enough to return to the career I love, but remaining covered (even though it's private insurance, not SSDI) has been a constant battle, which almost defeats the point. I'm supposed to be resting &
Thank you. It sounds worse than it is; I'm a mostly functioning adult with a support network and am glad to have any coverage at all. I find ways to deal with the pain and discomfort. But it's a travesty that we now have the double whammy of no universal healthcare and lack of research funding.
healing, not fighting with insurance because they won't approve a medication that my doctor prescribed. Last time they told me it's because it was prescribed "off label" and it's like yeah, you idiots, that's because there's no medication meant to treat what I have, thanks to a lack of research.
My mother had this cancer. So, chordoma has been part of my life since 1996. No medication yet. Surgery was in July and it's now almost 8 months. I'm getting back in the groove. I'm not end stage yet. But it will come back.
Comments
My kid’s life was saved by NIH grant [number]
NIH grant number X saved my mom’s life
NIH research brought us PrEP which keeps me alive
I’m reading the documentation from NIH RePORTER and while it’s more than a “simple form,” it does boil down to “a simple form” from a UI perspective. It’s just an API call with the search criteria.
The downside? NIH RePORTER is maintained by the NIH.
Likewise, making shirts, bumper stickers, etc would require a massive capital investment, BUT it could show what studies
But it’s all also available on https://reporter.nih.gov.
OVW Grant # saved my life by providing me with safe shelter from abuse.
Assuming the API call is uncomplicated (should be), it actually is a simple build.
I do own this shirt.