Thread by @JMGraglia

Time to contribute time energy information blood etc. to the #SYNGAP1 NHS at @ChildrensPhila in cooperation with @curesyngap1 seeing Drs @IngoHelbig & @JillianLMcKee. Can’t wait. So far we have done car, TSA and boarding.

Follow like this thread to see the trip.

#CHOPorBust

So odd to be flying East as the #UFDcure team drives West for the @cureSYNGAP1 cannonball.

There is so much happening. It’s wonderful. Get caught up in yesterday’s episode of #SYNGAP10.

podcasts.apple.com/us/podcast/syn…

@cureSYNGAP1 Landed! 108 games of plants va zombies later. Thank goodness was for kind people. Now driving to hotel. Tony confused by the dark.

@cureSYNGAP1 Hotel: “this bed is comfy, Plus A!”
Dinner with iPad: 👍🏽
Waking up at 6 local, 3 PST: so many questions.

@cureSYNGAP1 Somehow waking up and seeing @amicusrx1 out of the window while listening to Brett and Monica reflect on #SYNGAP1 parenting on the @cureSYNGAP1 cannonball makes me while that while my life is nothing like what I expected… I’m on the right path.

youtube.com/live/ilnPIwVy6…

@cureSYNGAP1 @amicusrx1 Breakfast of champions when keeping #SYNGAP1 #Epilepsy at bay.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ 8:26.
Check-in. Vitals. Plan for the day. Giving @cureSYNGAP1 brackets to everyone.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ 9 am. QEEG. Amazing that you can get so much data in 15-20 minutes.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ 10. Tony meets the one and only @IngoHelbig & Stacey Cohen. In a test of wills (with the “boss” as Tony calls him) it was a tie. Wonderful conversation. Our #SYNGAP1 community is lucky to have this team working on our disease.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig 11. PT with the very wise and experienced Sam. Great ideas and questions. Referrals. Thanks Goodness we get a write up after this.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig 12. CARS assessment (note the @curedravet lanyard) turned into working lunch where we got to meet Melissa and mom in person. I was star struck. 🤩 these two ladies are so strong and full of Grace. Read her story at syngap.fund/melissa

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig @curedravet 1. More visits with other SynGAPians and Dr. Boland. The ENDD team here at @ChildrensPhila & @Penn is full of kind, brilliant folks.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig @curedravet @ChildrensPhila @Penn 2. Let’s do OT. See Melissa again and get outta here. Again, good advice smart insights. #grateful.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig @curedravet @ChildrensPhila @Penn Walk through the beautiful Penn campus and head to airport. Time to go home.

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig @curedravet @ChildrensPhila @Penn We are 1 hour from home.
8pm PST
11pm EST
Tony has been up for 17 hours. (Woke at 6 EST).

Dosing him on west coast schedule. But if I give sleep meds now he’ll be out cold. How do I get 84 pounds of snoring 💤 Tony off this ✈️? Will wait till in car for Melatonin. 🤞🤞

@cureSYNGAP1 @amicusrx1 @CatalinaCrunch @jaydensJourney_ @IngoHelbig @curedravet @ChildrensPhila @Penn Landed. Off plane. In car. Meds in. 10 minutes later. Out cold.

#NeverUnderestimateASynGAPian