First and foremost, Happy Thanksgiving!
It’s been a while since I’ve sent a message out to everyone who signed up for this newsletter. I’ve been so caught up in the daily drama that is my son’s medical condition that there hasn’t been much time to focus on much else. (In case you have no idea what I’m talking about, I wrote about it in some detail here.) I’m glad to report on that front that Alastair recently had a successful (if very unpleasant) surgery for a cochlear implant, which means that he is now able to hear some sounds in one ear. It’s a start.
My wife, Chloe, and I feel strongly that Alastair’s condition, called Kernicterus, should not isolate him from the world. We’ve both been pretty open about what’s going on in our private life on social media and in press interviews.
One of the world’s leading Axiom Verge speedrunners, Dimitrios Lianopoulos (who goes by the handle GVirus), has been following our story and decided to leverage the strength of the speedrunning community to help support research into a cure or treatment of Kernicterus. He organized a charity Metroidvania speedrunning marathon which will kick off on Black Friday (today) – 11/25 – at 5pm ET/2pm PT and run for 48 hours! If you live in Montreal, you can go watch it live.
If you want to stream it, you can watch it at https://www.twitch.tv/noresetmarathon. All funds raised will go toward the Kernicterus Research Fund at the Kernicterus Center at Children’s Mercy Hospital in Kansas City. I’m immensely grateful and moved that GVirus thought to do this. Kernicterus is a relatively rare condition, so any awareness and research money that can be raised will be enormously impactful. Please see the attached flyer for more information.
I hope you can join us for the marathon and donate to this worthy cause!
P.S. If you can’t watch the stream but want to donate anyway, please click here. To designate your gift to the Kernicterus Center, go to “Gift Designation”, choose "Other, Specify below" in the dropdown menu, and then write underneath in the “Comments” field “Kernicterus – In honor of Alastair Happ”.