Builder of software and teams at Chronosphere. Maker of wood things. #STXBP1 parent. Big fan of @erinmevans

Seattle, WA
Joined December 2010
Hi. If you don’t know me, my name is Kevin. Along with my wife Erin, we’ve decided now is the time to share the story of our 5 year old son Ned and ask for your help. donorbox.org/finding-a-cure-…
5
53
11
110
Crazy that this has to be argued for, when there exist codes like “Burn due to water-skis on fire”. 🤞 it’s approved!
This week, @IngoHelbig presented our case for the need for an #ICD10 code for #STXBP1 to the @CDCgov. We applied for a code in June 2021, so we have been working toward this important meeting for almost 2 years. Many thanks to @SarahRuggieroGC, @combined_brain and @TESSResearch
1
1
3
675
Kevin Goodier retweeted
Cover launch! From @erinmevans comes Relics of Ruin, the sequel to Empire of Exiles featuring an unlikely team who must work together and solve an empire-spanning mystery to defend their home. Learn more: bit.ly/3KvqLdM Design by Alexia Mazis Illustration by @FBaerald
9
26
22
112
38,378
Kevin Goodier retweeted
We caught up with @Prosser_Lab and @IngoHelbig yesterday to learn about the amazing new #ENDD center. Check out the webinar recording here: bit.ly/STXBP1-ENDD Let's #cure #stxbp1 & #SYNGAP1 and other #neurodevelopmentaldisorders @ChildrensPhila @PennMedicine @charleneson
1
12
43
3,313
Kevin Goodier retweeted
Thrilled at the potential to ENDD neurodevelopmental disorders. $25M gift establishes @PennMedicine @ChildrensPhila interdisciplinary Center to accelerate therapies for #NDD. Initial focus #STXBP1 and #SYNGAP1. Let's go! @Prosser_Lab @IngoHelbig pennmedicine.org/news/news-r…
7
1
37
1,732
This is incredible news for #stxbp1 (and others!)
What a privilege to have the team and opportunity to try and help my daughter and those like her live healthier, fuller lives. We will be a relentless force for good against #RareDisease. @IngoHelbig @lab_davidson @ChildrensPhila @PennMedicine tinyurl.com/yf649bcc
1
5
507
I’m struggling with what to write here. This just hits so close to home. Please read if you want the real answer, the one we don’t talk about, to “how have I been?” the past 7 years.
1
3
17
2,341
I'm still hiring engineers in 2023 and coming across lots of amazing tech talent coming out of Twitter. These are folks who have not been on the job market in the past 5-7 years, but have really blown us away during our interviews with them. Some quick thoughts on it. 🧵
5
31
4
284
71,122
Here is my summary from #AES2022, focused on the development of therapies for the rare epilepsy syndromes, and more specifically on treatments for the *cause* of the disease. I reviewed 8 syndromes, there is so much going on! draccon.com/dracaena-report/…
6
33
8
85
Attention #AES2022 clinicians, if you haven't heard about #STXBP1 disorder you have a chance to drop by table #233 and hear from @curestxbp1 about it. It is one of the most common rare epilepsy syndromes so you should keep an eye on it!
2
10
1
34
Kevin Goodier retweeted
On #GivingTuesday2022, we are honoring our STX'ers...Every $250 raised honors an STXBP1 child. We plan to honor over 200 STXBP1 kids throughout the day on Giving Tuesday! Our Goal is to raise $50,000! Donation link: give.stxbp1disorders.org/Giv… #stxbp1 #curestxbp1
My wife says it best ❤️ If you’re able to donate or spread the word to your circles, it would mean the world to me and my son. 🙏
You’re unable to view this Post because this account owner limits who can view their Posts. Learn more
2
6
Kevin Goodier retweeted
One of the things that I think is sad about the decimation of Twitter eng is that Twitter was doing a lot of interesting (and high ROI) engineering work that, at younger companies, is mostly outsourced to "the cloud" or open source projects A few examples off the top of my head:
The value of in-house expertise danluu.com/in-house/
28
580
166
2,283
Kevin Goodier retweeted
A scribe, a mage, an archivist, and an investigator. Four unlikely heroes. A secret threatening an empire. Empire of Exiles by @erinmevans is on-sale today! US: bit.ly/3S9h7NW
My TikTok on #Mastodon and how it works tiktok.com/t/ZTRxF7h6H/
31
204
66
684
Kevin Goodier retweeted
Today, i'd like to share the work of @curestxbp1! STXBP1 Foundation is a parent-led group "Leading the Charge for a Cure to epileptic encephalopathies and related neurodevelopmental disorders caused by changes in the STXBP1 gene." #12Days
3
4
1
11
Kevin Goodier retweeted
This seems like a fine time to look back on the rather decent API platform our team built at Twitter.
30
190
44
1,380
Kevin Goodier retweeted
I got an eARC for @erinmevans upcoming novel, Empire of Exiles. It was a blast. I loved her DnD novels, but no excuse not to read Evans now, if those aren’t your thing. youtu.be/NUoUc-yR6ic
1
2
4