Pavel G

Advocating for #SYNGAP1 with @cureSYNGAP1

[Peter Halliburton @phalliburton]

“It’s already been a year?” It has & 2 weeks from today we’ll be in the final stretch of #CannonballForTheCure3 benefitting @cureSYNGAP1! Check the new SRF-branded @Ford Lightning!

Shoutout @UFDTech & @SydneyStel for all the work they put into this!

We’re going to @cureSYNGAP1!

[Pavel G @pavelg0]

@phalliburton @cureSYNGAP1 @Ford @UFDTech @SydneyStel Incredible event, thanks to SYNGAP1 dads!

[Pavel G @pavelg0]

@JillianLMcKee @AmEpilepsySoc @cureSYNGAP1 @IngoHelbig @JulieXXian @CHOP_Research @CHOPDBHi @PennNeurology Congrats and thank you for working on SYNGAP1!

[Pavel G @pavelg0]

@l_mizen @carid_pwc @cureSYNGAP1 Thank you for your support!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

SRF's Legal Director/Nathan's Dad, Kevin Frye, representing #SYNGAP1 🧬 @gatlinburgcon. Check out our fab table & so many friends of the fund @TJBichell, @combined_brain, @OnceUponAGene, @prk2, Dr. Rodney Samaco & Kristin Hatcher. #community #raredisease #StrongerTogether

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

The @KCStar knows what they are doing, this great SYNGAP1 press made it to the front page today. Just in time for the @gatlinburgcon!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

SRF announces $130k collaborative grant to the Tang Lab @BostonChildrens & @Axonis_US to see if a #KCC2 enhancing drug will ameliorate #SYNGAP1.

Also quoted: @SVH_neuro, @KadamLab & @JMGraglia.

This is possible due to the generosity of our families.

https://t.co/CmdNY3gDsP

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Read & share this @Newsweek story profiling SRF, our founders (@SYNGAP1mom & @JMGraglia) and Tony's diagnostic journey.

https://t.co/eyWvSifnaL

FYI @StanfordChild @IDreamofGenes @Invitae @Labcorp (MNG)

[Ana Mingorance @CNSdrughunter]

Great update from @cureSYNGAP1 🔊
✅ Difference between treating symptoms vs SYNDROMES
✅ "Neurons want their syngap back"
✅ Companies are learning how to rescue genes and #SYNGAP1 is on the list
✅ Patient community removing barriers to trial design
✅ "We are so close" 💚💜💙

[Peter Halliburton @phalliburton]

90% through #CannonballRun to @cureSYNGAP1 w/ $94k raised! We have a 1:1 match from @Intel for the next $4k! At $100k we’re getting #TushTats, this time is our kids’ SYNGAP1 variant address!

And, if @cureSYNGAP1 gets to 10k followers, @JMGraglia is donating $5k! Share! Share!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Thank you @Forbes & @tech_must_flow for this profile of the current #SYNGAP1 #Cannonball for SRF to help our patients with @rarebasepbc!

This @Tesla is going to help us raise the funds we need to help our loved ones!

https://t.co/ri2tMQCpbJ

#raredisease @UFDTech @phalliburton

[Sydney Stelmaszek @SydneyStel]

SEE YOU FRIDAY! @UFDTech @cureSYNGAP1 @rarebasepbc
Thanks to generous partners, we have over $20,000 in giveaways this year! Fuel up your cars (or hit the Super Charger), some of them have to be claimed in person!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Amazing work from the Co-Chair of SRF UK 🇬🇧! 100 km
🚵 to raise funds for #SYNGAP1 research at @PWCentre with Profs Cobb & Kind. Congratulations @Cdnchick74!

[Peter Halliburton @phalliburton]

Hey @SriyaReddy23 @1SusanMcFarland or @isabellavolmert would you consider covering this? We’re 1 week out! On a mission to pass last year’s $151k raised to find a treatment for our kids! Last year’s story by @dallasnews https://t.co/lcyiLApoaA

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

📢 SRF 🇺🇸, Wandoan Campdraft @SyngapAus 🇦🇺, Soley for Syngap 🇩🇪 and Leon & Friends 🇦🇹 grant $130,000 to @JMColler Lab at @JohnsHopkins for #mRNA #SYNGAP1 🧬 Research!
cc @TevardB
https://t.co/ChzfaTYQJU via @EurekAlert

[Peter Halliburton @phalliburton]

Hey @UFDTech - a promise is a promise!

F78.A1… on my butt.

4 weeks till #Cannonball2 to @cureSYNGAP1!

Let’s raise some money! 💜

#UFDcure #CannonballForTheCure

[Jess Fares @Cure_Cole]

#SYNGAP1 can cause low muscle tone and #gait issues, but Cole is crushing his #PT goals 💪🏻
#hypotonia #physicaltherapy

[Beata Tarasiuk @beatasyngap1]

Crazy hair day at school today! How to make a syngapian seat still for this? Well you cannot so this is a true magic! #syngap1 #epilepsy #ID #teamkasia for those of you who wonder, no she doesn’t understand the crazy day, but she still gets to participate in a school spirit week.

[Sandy Smith @sandysmith317]

Myla makes a friend! She is doing so great in kindergarten, ready to go with her backpack each morning. I’m so thankful for the other kids and staff that are so #inclusive. @cureSYNGAP1 #SYNGAP1 #RareDisease

[Pavel G @pavelg0]

@waze the lag issue in Carplay is still unresolved after over a month, with no update. App is unusable, is there any news?