Thread by @JMGraglia

Heading to LA to do a HDEEG with Tony for a @curesyngap1 supported #SYNGAP1 #biomarker study @UCLAHealth then meeting Drs COBA & @MarcellaBirtele at @KeckMedUSC. 🤞

Grateful @BostonChildrens - @sahin_m & @BCH_PoduriLab added a West Coast site!

Follow this 🧵 today!

Made it to #LAX on @SouthwestAir (thanks to iPads and @angrybirds). So many questions. Reminds me how much we don’t do with Tony because of #SYNGAP1. He’s sporting his @GlobalGenes backpack & @cureSYNGAP1 shirt.

SynGAPians are photosensitive so must remember 🕶. And they don’t really 😓 Sweat. So I brought a cooling vest. Didn’t think I’d need it to get to Lyft. I was wrong. He’s already done.

Haven’t done escalators for a while. Notice the in-toe on the ride down. #hypotonia #Syngap1

SynGAPians will just run away or “elope” without warning — #autism — so we have an @apple #airtag just in case… so many thing to think about when you leave the safety of your routine.

He’s really not into LA traffic.

Made it. Warm welcome by project organizer. Step one measure the great to soak the net in electrolytes. 10-15 minute wait.

As soon as he steps out, Tony looks at me and says “he’s gone, let’s run for it!” Like running the halls of neurology clinics is a standard game. 🤷‍♂️

Wow. Sitting in a closet with wires everywhere. Staring at two monitors and meeting a cap of electrodes taking a bath. What will this thing look like?

So much faster than a regular #EEG to put on. After seeing Tony get so many clinical EEGs with so much attention to detail this one felt almost casual, but I guess there are so many more electrodes. Then we started the test….

5 rounds of stimulation. 2x visual: colors. No biggie. 2x sounds, he hated it. Asked for quiet. Tech asked if we should skip the second one, I was like no way, we came here for this. Then a series of faces and other images. Each upside down face made T twitch. Odd.

Thank goodness we brought the cooling vest. Walking to lunch in the shade. Don’t forget meds. 🌮🌮🌮

It’s an hour to @KeckMedUSC from UCLA. But we made it. Time to meet some legends and get a very special photo.

After testing the security of nearby labs Tony got to meet his mini-🧠 (organoid). Trippy. Incredible to spend a few minutes with the team from @GiorgiaQuadrato Lab and Dr. Coba. @cureSYNGAP1 is lucky to have them on Team #SYNGAP1. See biorxiv.org/content/10.110…

Tony is ready to go home.

And we made it.