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Mike Graglia 🌻
13.6K posts
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Mike Graglia 🌻
@JMGraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Mill Valley, CA
cureSYNGAP1.org
Joined May 2011
2,298
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  • Pinned
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    Mike Graglia 🌻
    @JMGraglia
    Oct 4, 2023
    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
    6.2K
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    Mike Graglia 🌻
    @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!
  • user avatar
    Mike Graglia 🌻
    @JMGraglia
    May 28, 2022
    Tomorrow is my birthday, I'm matching every dollar raised on FB for @cureSYNGAP1 the 501c3 I founded to help my son and the 1,000+ patients just like him. Join me to help children with #Autism, #Epilepsy & #ID. We can fix this. facebook.com/donate/1933159…
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    Mike Graglia 🌻
    @JMGraglia
    May 2, 2023
    Fabulous visit to Philadelphia! @cureSYNGAP1 & @curestxbp1 met with the ENDD teams at @PennMedicine & @ChildrensPhila. ENDD Program is the end of excuses re treating #SYNGAP1 & #STXBP1. The incredible souls in these photos can do this. We are excited to partner with ENDD.
    5.2K
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    Mike Graglia 🌻
    @JMGraglia
    Mar 20, 2021
    Replying to @momahsoka @bannerite and 2 others
    Please do. The only way to stop @ATT from subsidizing domestic terrorism and its deniers is to make it hurt their bottom line πŸ’°.
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    Mike Graglia 🌻
    @JMGraglia
    Feb 16, 2023
    Wonderful & strange to look at the neurons of my two sonsπŸ‘¨β€πŸ‘¨β€πŸ‘¦β€πŸ‘¦ (#SYNGAP1🧬 Variant & Wild Type) side by side on a plate. Thank you @rarebasepbc, @onnofaber, @omidkarkouti & @cureSYNGAP1 for making this possible. Three more lines to go! πŸ’Š#Repurposing #RareDiseases #TherapiesNow
    3.5K
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    Mike Graglia 🌻
    @JMGraglia
    Jun 23, 2022
    Team @cureSYNGAP1 is here at the @curedravet bi-annual conference to learn best practices of running a rare #epilepsy patient advocacy group. Up first, @Science_Hood giving a science primer. #curedravet #DSFinDFW #Syngap1
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    Mike Graglia 🌻
    @JMGraglia
    Apr 27, 2022
    Replying to @KirstenAllen46
    Thank Goodness at least one person in America can get some.
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    Mike Graglia 🌻
    @JMGraglia
    Apr 28, 2023
    That’s a wrap. Another fabulous @GlobalGenes Rare Entrepreneur Bootcamp @ultragenyx where I shared @cureSYNGAP1 alongside Geraldine Bliss of @CureSHANK & @charleneson of @curestxbp1. This is one of the best meetings there is for patient advocates. Thank you to Yael & sponsors!
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    Mike Graglia 🌻
    @JMGraglia
    Feb 13, 2023
    I was explaining that they should develop a #SYNGAP1 biomarker & then replicate the approach for other monogenic diseases. "Ah the long tail of #RareDisease..." they said, as if they understood. "No tail." I said, "Think SWARM." There are 1,000+, this is just my top 100 🧬s.
    5.5K
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    Mike Graglia 🌻
    @JMGraglia
    Jun 14, 2022
    I am grateful to make this list and to have the work of @cureSYNGAP1 noticed by my friends at @GlobalGenes. The honor is being in the company of so many good people like Effie at @OnceUponAGene and Jeff D'Angelo of @CHAMP1Research. #CAREaboutRARE #SYNGAP1
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    Global Genes
    @GlobalGenes
    Jun 13, 2022
    Introducing the nominations for the 2022 Rare Champions of Hope Awards. This year we received 190 incredible nominees! Congratulations everyone! View the full list here go.globalgenes.org/3HihbXZ #COH2022 #COHnominees #RareChampions #CareAboutRare #RareDisease #ChampionsInRare
  • user avatar
    Mike Graglia 🌻
    @JMGraglia
    Apr 21, 2022
    Front row seats at the Ultragenyx #RareDisease Bootcamp private performance by @casiomac. So very many amazing souls in this room. @OnceUponAGene @charleneson @fam177a1mamma @Houri_naz @cacna1a @GlobalGenes @rarebasepbc @curechd2 @healx @cureangelman @ThirdRockV & @cureSYNGAP1!
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    Mike Graglia 🌻
    @JMGraglia
    Jul 13, 2022
    ❀️ it when a brilliant scientist @jmcoller working with a strong company @TevardB publishes about a therapeutic modality (Tethered mRNA Amplifier) that includes #SYNGAP1 (@cureSYNGAP1) & friends #MECP2 #SHANK3 #CHD2 & #PTEN! cc: @Rettsyndrome @CureSHANK @curechd2 @PTENResearch
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  • user avatar
    Mike Graglia 🌻
    @JMGraglia
    Oct 14, 2022
    Should you tell patients about a #VUS🧬 if you aren't sure? Yes! Please tell patients (especially #SYNGAP1) Excited to discuss with @IngoHelbig (@ChildrensPhila) Lacey Smith (@BostonChildrens) & @nhnchrd at #CNS2022. πŸ™πŸΌ @paul_kruszka & @GeneDx for the opportunity. @cureSYNGAP1

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