This is so impressive - kudos to you. Thanks for sharing and being open to questions.
How much overall has this costed you? Do you think that a middle-class person could afford to do what you did?
> So, I laddered up the academic food chain using a little cash (donations), emails, airline tickets, and conference admission. ~2 years after my diagnosis I found myself in a closed-door session called the MPN Roundtable in Chicago with 100 of the foremost experts in the world. No cameras, no transcripts, just some of the greatest minds in the field earnestly debating the path forward to a cure.
Why don't they allow recordings at the MPN Roundtable? It could be useful for others to learn from.
For this project, seed capital low six figures. I am collaborating with family and friends, non-profits, and using doubling mechanisms available to me to at work to fund the very early speculative bench research. This is where we are and its sustainable today.
Once we have the basic tech worth scaling up - to raise the first round of capital, I estimate $1-2m with a wider friends & family and angel investor round. This will be early de-risking research and delivery mechanism testing.
Beyond that I can see a path to a ~$20m round to further de-risk any assets that come out of these speculative efforts, but I haven't gotten this far.
In rare disease therapeutics the challenge isn't raw capital, it's finding the _right_ capital that understands how assets like these get de-risked and can tolerate the shape of the upside. Anything CRISPR-based is usually not a chronic therapeutic, so that disqualifies most of big pharma. Acute, curative technology like this requires informed capital.
> Do you think that a middle-class person could afford to do what you did?
Yes.
In the rare disease field even a small amount of capital attracts enough attention to have meaningful conversation with bench researchers. If you're willing to travel to the niche conferences, ask dumb questions, grind out the studying, and approach the speakers after their sessions.
Researchers respect people who do their homework and mobilize to meet them. They want (need) to hear from patients and caregivers - so they tend to listen very carefully.
Fun fact: I've had multiple researchers ask me for samples of my bone marrow. Has only happened in-person :)
> Why don't they allow recordings at the MPN Roundtable? It could be useful for others to learn from.
I don't know, it's been going on for a while. I can speculate: they're discussing pre-publication data, some of which had come out of their labs only hours prior to their presentation. It's completely unfiltered. I think there's real risk of some of the things that are shown being sensationalized or taken out of context.
The audience is trained and practiced in keeping a sober, skeptical lens on everything they see - so it's more about the debate and tear-down of the early data for the betterment of the niche.
There's zero attempt to hide anything, it's just a forum for collegial debate.
What exactly do you mean by "a large percentage"? Cancer.org[1] says that it's 1 in 8 men during their lifetimes, the parent post says "almost all men get it at some point" -- where is this info coming from?
> After reading many reviews I kept on coming back to the same brand which I had sworn to never buy another item of due to their disrespect of users’ systems integrity, aka the ‘rootkit debacle’
Does Sony really have the best noise cancelling headphones? What brands/models have worked for people here? I've continuously struggled with distracting noises through my education.
Bose are very good. I've a pair of wireless over ear headphones and my girlfriend has the wireless in-ear ones. Noise cancellation is very good with both, especially for constant background noise.
All over ear headphones will tend to cause your ears to warm up, so the in ear ones are more comfortable. But the integrated microphone with the in-ear headphones is surprisingly poor for phone calls.
How large are their OTA headphones? I've been wondering about OTA noise-cancelling headphones for a while for both music and cycling as I've bad ears and excess wind leads to repeated otitis on short order (making actual non-stationary cycling problematic). But I also have large ears, so most OTA would literally sit on the ear cartilage and pressing it against the ear, making wearing them for extended periods very uncomfortable. I remember AKG cans having large-enough pads that they'd fit properly.
I use Sennheiser's PXC 550s and have recommended them before. The cost is reasonable compared to Bose/Sony, and the quality of the product is excellent.
I have some advice that I think could be great for improving Impact Trail, but your email address isn't in your profile. Would you mind sharing your email address?
If you'd prefer to just email me, my email address is in my profile.
I've added the following to my grub options (this helps a lot if you use Gnome3 like me): pcie_aspm=force i915.i915_enable_rc6=1 i915.i915_enable_fbc=1 i915.lvds_downclock=1
Which makes the complete entry look like:
title Arch Linux
root (hd0,0)
kernel /vmlinuz-linux root=/dev/sda5 ro pcie_aspm=force i915.i915_enable_rc6=1 i915.i915_enable_fbc=1 i915.lvds_downclock=1
initrd /initramfs-linux.img
I also use thinkfan to keep reasonable fan speeds along with the ondemand cpu-frequency scaling policy on battery power keep power usage down. I also minimize disk usage by taking advantage of my 8GB of memory and placing /tmp in tmpfs. These days I usually get 8-10 hours of actual use on a single charge, but most of that is writing/running code and browsing the web. If you usually do something more CPU taxing, you'll probably run closer to 5-7 hours. That's using the 9-cell battery that juts out from the case slightly and a low power SSD.
The most annoying part of the X220 is the buttonless clickpad. It works really well if you use the tap to click features, especially since the multi-touch lets you scroll around and double/triple click with multi-taps, but in the end I just couldn't get used to tap to click. Using the actual click/button, click and drag is so horribly broken with clickpads on Linux (and even Windows, if you ask me), that I gave up on that fairly quickly too. Finally I just disabled the touchpad in the BIOS. The touchpoint works too well to bother stressing over the ill-conceived touchpad on this model.
The IPS screen is great, but there is some occasional ghosting. It's only a temporary effect though, so it's a price I'll gladly pay for having a better image than any of the external monitors here in the house. It's also extremely bright, so I suggest turning down the brightness a few steps and letting your eyes adjust, otherwise you'll unknowingly burn your eyeballs out.
The battery also has a little bit of looseness when it's locked in. Based on what I've seen on other forums, this one's hit or miss, with some people having the same problem and many others not. Overall though, the laptop feels fairly solid without being heavy, but it's not nearly as solid as the X120e (which feels dependable) or the aluminum-body Macbooks.
Finally, the keyboard on this thing is great. The keys are nice and big, the escape key is prominent and in the right spot, and the quality of the tactile feedback is perfect.
If I had to choose all over again, I would've gotten an X220T, since I underestimated how much I use my wacom tablet, but other than that, I'm quite happy with the X220.
The ips screen has more up/down blind color spots than the cheap version.
Can't say about color quality, but I'm cursing myself for getting one since i have to move my head up/down when i have to read the very top and very bottom of the screen with a dark colored image
It seems like giving all of the people in the test area Chromebooks would be a really great move by Google, because people would associate Chromebooks with "lightning-fast" once they advertised the two products together.
Based on my month with a Chromebook, the only thing lightning-fast about it was its bootup. It was pretty choppy at rendering pages, while Chrome on my desktop was in fact lightning-fast.
It leads to terrible neck problems, like the pinched nerve I have. It causes significant discomfort, then intense pain and, eventually, numbness in one or both arms. Recovery is on the order of several years (and counting).
I think that whether you decide to show the comment scores immediately or not, you should should show them after some delay.
Judging from the replies to your comment, pg, at least some people read old threads. I know I do. I find helpful advice and information from them all the time. I think that people reading these threads should be able to get the benefit of seeing the scores.
The arguments against showing comment scores are almost exclusively about the thread quality. If the scores aren't shown until it's too late to comment, there isn't going to be any noticeable impact.
If I haven't overlooked anything significant here, you wouldn't be hurting any aspect of the site, but you'd be helping some people get more out of it.
How much overall has this costed you? Do you think that a middle-class person could afford to do what you did?
> So, I laddered up the academic food chain using a little cash (donations), emails, airline tickets, and conference admission. ~2 years after my diagnosis I found myself in a closed-door session called the MPN Roundtable in Chicago with 100 of the foremost experts in the world. No cameras, no transcripts, just some of the greatest minds in the field earnestly debating the path forward to a cure.
Why don't they allow recordings at the MPN Roundtable? It could be useful for others to learn from.
reply