Pavel G @pavelg0
Advocating for #SYNGAP1 with @cureSYNGAP1 Joined April 2013-
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Following229
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“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!
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
The @KCStar knows what they are doing, this great SYNGAP1 press made it to the front page today. Just in time for the @gatlinburgcon!
The @KCStar knows what they are doing, this great SYNGAP1 press made it to the front page today. Just in time for the @gatlinburgcon! https://t.co/3WcdNYzi6j
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. eurekalert.org/news-releases/…
Read & share this @Newsweek story profiling SRF, our founders (@SYNGAP1mom & @JMGraglia) and Tony's diagnostic journey. newsweek.com/my-son-syngap1… FYI @StanfordChild @IDreamofGenes @Invitae @Labcorp (MNG)
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" 💚💜💙
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" 💚💜💙
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!
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! forbes.com/sites/billrobe… #raredisease @UFDTech @phalliburton
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!
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 dallasnews.com/news/inspired/…
📢 SRF 🇺🇸, Wandoan Campdraft @SyngapAus 🇦🇺, Soley for Syngap 🇩🇪 and Leon & Friends 🇦🇹 grant $130,000 to @JMColler Lab at @JohnsHopkins for #mRNA #SYNGAP1 🧬 Research! cc @TevardB eurekalert.org/news-releases/… via @EurekAlert
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
#SYNGAP1 can cause low muscle tone and #gait issues, but Cole is crushing his #PT goals 💪🏻 #hypotonia #physicaltherapy
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.
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
Who wants to help a disabled child get safely away from a nuclear ☢️ reactor in a war zone? You do. 💙💜💚 #SYNGAP1 💛💙 #SalvaUkrani ❤️ #helpneeded secure.givelively.org/donate/syngap-…
What's better than live streaming a Cannonball and raising $150K for rare disease research? Doing it in a Lightning! @Ford Corporate, can you help? [email protected] @UFDTech @ebergg @MrLevine @KelliFelker @jimfarley98 @cureSYNGAP1 @FordFoundation @JMGraglia
📢 @OSyngap1🇨🇦, Wandoan Campdraft @SyngapAus🇦🇺 & @cureSYNGAP1 🇺🇸 grant CAD$150,000 to @Bowie_Lab at @mcgillu for Small Molecule Translational Research for #SYNGAP1🧬 #intellectualdisability. #Collaboration eurekalert.org/news-releases/… via @EurekAlert
PAPER ALERT 🚨 @Prosser_Lab🫀🧠 with @lab_davidson & @EAHellerPhD of @Penn / @PennMedicine have identified #PTBP2 for #RNA splicing and it's impact on 🧬 #SYNGAP1 as well as #STXBP1 #DLG4 & #GRIN1. Tremendous work. Now let's validate this in🐁 & then patients... Keep going.
PAPER ALERT 🚨 @Prosser_Lab🫀🧠 with @lab_davidson & @EAHellerPhD of @Penn / @PennMedicine have identified #PTBP2 for #RNA splicing and it's impact on 🧬 #SYNGAP1 as well as #STXBP1 #DLG4 & #GRIN1. Tremendous work. Now let's validate this in🐁 & then patients... Keep going.
Tirmjouj @Tirmjouj403721
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International Meeting... @IMLaminopathies
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Nancy Leib Kessler @nkessler0110
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Tina @TinaMarie092473
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hans p schlecht @hanspschlecht
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Jennifer @jencallansmith
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Endure_Rare 💙💚�... @Endure_Rare
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528 Followers 843 Following Biorasi is a CRO widely recognized for delivering success in complex clinical trials worldwide.
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Kali Worth @WorthKali
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Caitlin @caitlin_kaspar
152 Followers 349 Following Gymnastics Instructor 🤸♀️🎀 | #Syngap1 Sibling 💜💚💙 | #Nonprofit Professional | Jersey Girl | Beach, Books and Tea 🏖📚🫖
Jini Jordan @JiniJordan
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Beata Tarasiuk @beatasyngap1
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Sandy Smith @sandysmith317
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1.0M Followers 3K Following @CBSsportsGolazo, @BBC5Live, @LaLigaTV, @Biggleswadeutd, YT, @guideclothing [email protected] 📚 [email protected] IG: @guillembalague
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70K Followers 2K Following | Dad & Husband | Veteran | Democrat | Alumni of @WestPoint_USMA and @GeorgetownCSS | Proudly Representing NY-18 in Congress |
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344K Followers 20 Following Developed by @larianstudios. Gather your party, let's play some Dungeons & Dragons. Baldur's Gate 3 is available on PC, PS5 and Xbox Series X|S with cross-play!
Gappy (Giuseppe Paleo... @__paleologo
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