Laura

Computer scientist in vr/ar r&d. Feed = mishmash of tech and life as a rare disease parent (slc6a8, Creatine deficiency)

[Laura @auract]

@AlaskaAir @AlaskaAir 7 hours here for flight 1175 out of San Jose to Seattle. At the bare minimum we, the people in the plane, deserve a basic update. This not ok

[Laura @auract]

@AlaskaAir any updates on flight 1175 out of San Jose to Seattle? Close to 7 hours now waiting for any sort of update of what’s going on. At least empower your pilots and crew to tell us where things are. Periodic updates and transparent communication should not be so difficult

[Laura @auract]

@AlaskaAir flight 1175 from San Jose to Seattle is delayed by more than 6 hours. No update if we are taking off or not tonight. There are Alaska flights taking off around us. At least have the decency to give us an update rather than keeping us in the (dark) airplane.

[Laura @auract]

Had a blast today giving a keynote at the 2023 International Symposium on Visual Computing, even remote

https://t.co/71uXPkxLMa

As a bonus I did feature my favorite quote from meta connect: “all of this technology, it only matters if you’re wearing the glasses” - Li Chen Miller

[Laura @auract]

Because the past 2-3 years have been a series of unfortunate events, I used to joke that the next thing that has to happen to really surprise us is aliens.
Then we got chatgpt4. We just hit alien intelligence folks!

[Laura @auract]

@AlexTensor @Peter_shirley That’s what I was going to recommend as well :)

[Laura @auract]

@UpliftingAth Super excited about the @CreatineInfo draft with @UpliftingAth! Creatine deficiencies is a rare disease that many athletes can relate to: your body and your brain needs a lot of creatine to function. Can’t wait to see all the awesome things we accomplish, athletes and researchers

[Stephanie Fischer @RarePOV]

Very disappointed to learn @amazon is discontinuing the AmazonSmile program which has been beneficial for many #raredisease nonprofits that lack name recognition & corporate sponsors but serve patients who likely have no FDA-approved treatment. We need companies to #CareAboutRare

[Laura @auract]

Ok who’s generated winds of winter in gpt3? Or at least re-written the last episode of game of thrones?

[Laura @auract]

Fuck seizures! When do we declare war on seizures ? Where are all the startups to find treatments for seizures? Monitoring? Better matches between meds and seizure types?

[Laura @auract]

Seizures are like being in a war zone. You don’t know when and how you’re gonna get hit, or if you’ll make it. Granted,I haven’t lived through a war zone so I hope this is not insensitive. Closest was the 89 Romanian revolution. Hear me out though

[Laura @auract]

And don’t get me started on the ptsd. Every small sign you freak out and drop everything because what if it’s a seizure. Or worse, what if triggers a cluster of seizures where you can’t sleep, eat, or hold water down.
Not to mention go to work or school.

[Michael 英泉 Eisen @mbeisen]

You know what I don't want to ever hear again? A single complaint from anyone about how efforts to fix science publishing are going to affect their society or society journal. Because far more than anyone else it is scientific societies who are responsible for creating this mess.

[Aaron Hertzmann @AaronHertzmann]

Congrats to the winners of the first-ever @siggraph paper awards! https://t.co/ZGk9JUJRno
Here are the five best-paper winners; honorable mentions listed in the post. 1/6

[Laura @auract]

Maybe alI the excitement about AI and artificial neurons means epilepsy and seizures become better understood. even with dozens epilepsy meds, ~30% of ppl continue to have seizures.
https://t.co/OAymQ4i58l

[Peter Shirley 🔮🛡 @Peter_shirley]

I loved this deep dive conversation on HMD improvements between @boztank and @douglaslanman. I can hardly wait to get a look at HDR VR (I have been wanting to see that for literally decades). H/T to @auract for telling me I would like this! https://t.co/I52JcbbHlE

[Laura @auract]

Patient orgs can drive research

[Creatine Info @CreatineInfo]

We’re happy to have Manuel Cernigoj with Axxam speaking now, providing information for the first time on an ACD-funded drug repurposing study re: high throughput assay development for #CTD #CCDS2022

[Laura @auract]

I like to think this gathering was the equivalent of asilomar conferences for biotech and all of us parents and patients are starting a revolution in citizen science and driving treatments for our loved ones. Proud to be #RareAsOne!

[biohub @biohub]

Thanks to everyone who joined us for the 2022 #RareAsOne annual meeting! It was a great opportunity to gather and hear from our grantees, researchers and clinicians about their incredible work in finding treatments + cures for #RareDisease