Mike Graglia 🌻 Profile picture
Oct 4, 2023 16 tweets 12 min read Read on X
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

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


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

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


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

Image
Image
Image
@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.

Image
Image
Image
@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



Image
Image
Image
Image
@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.


Image
Image
Image
Image
@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.


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


Image
Image
Image
Image
@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. 🤞🤞

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

#NeverUnderestimateASynGAPian

Image
Image
Image

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Mike Graglia 🌻

Mike Graglia 🌻 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @JMGraglia

Oct 19, 2022
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
Read 13 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(