Virginie McNamar
@VirginieMcNamar
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Rare Disease advocate, Syngap1 mom, @CureSYNGAP1, Founder of Betterflye
Joined March 2012
It’s an honor to help lead this next phase alongside @JMGraglia and our amazing team. Together, we’ll continue pushing forward, always fighting for all of our kids. 💪 #RareDisease #Advocacy #ClinicalTrials #cureSYNGAP1.
Virginie McNamar, #SYNGAP1 Mom and dedicated volunteer, will be SRF's new President and COO! Read our press release at #CureSYNGAP1
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Drug screen ✅.Positive hit ✅.Patients on drug with positive results ✅.Getting a French over the counter drug approved in the US for #Syngap1 and available for entire community = new⛰️to climb and challenge accepted!.
Drug Repurposing is coming for #SYNGAP1! In our very first Drug Repurpose update, we look at N-acetyl-L-leucine (NALL). @ClementYChow
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RT @FCPride09G_ECNL: We are underway at ECNL Dallas!. Starting XI vs. Real Colorado. @ECNLgirls @ECNLOhioValley @FCPGirlsEcnl
https://t.co/….
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RT @FCPride09G_ECNL: This weekend we kickoff our 2023-24 @ECNLOhioValley slate in Cleveland with games against @ClevForceSC & @ISCgirls htt….
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Beautiful but I hate what these supermoons do to my #syngap kid. No sleep, more #seizures, crazy emotions, total mess! As anyone ever published a scientific paper on this? Also @NASA when is the next one? I need to mentally prep for it.
It’s a bird! It’s a plane! It’s a supermoon!. A supermoon occurs when a full moon occurs near the Moon’s closest point to Earth in its monthly orbit. Catch the next one now through Thursday, Aug. 3, and reply with your favorite photos.
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RT @StokeTx: #DYK more than 80% of cases of SYNGAP1 are caused by a haploinsufficiency of the SYNGAP1 gene?. We’re working with @acadiaphar….
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RT @cureSYNGAP1: SRF announces $130k collaborative grant to the Tang Lab @BostonChildrens & @Axonis_US to see if a #KCC2 enhancing drug wil….
eurekalert.org
SynGAP Research Fund (SRF), a 501(c)(3) public charity whose mission is to improve the quality of life for SYNGAP1 patients through the research and development of treatments, therapies and support...
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RT @cureSYNGAP1: Nathan has #SYNGAP1 and now a service dog to help! Panda is featured in as well as Episode 5 of Sy….
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RT @LGS_Foundation: We’re excited to announce that Phase 1 - Own Your Medical Records - of the LGS Foundation’s Learn from Every Patient Da….
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RT @LGS_Foundation: Patient families with LGS participate in clinical trials and take survey after survey, but too often this information i….
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Thank you @JazzPharma for your #epidiolexengage program to fight on behalf of families for access. My son has been on #epidiolex for 4 years, good seizure control and no side effect but constant battle with #insurance, hours on the phone. @cureSYNGAP1 @LGS_Foundation.
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RT @cureSYNGAP1: 💜Did you catch this new SYNGAP1 family movie from SRF? . 💙SRF director Melissa Foster & her husband @MichaelSFoster1 had t….
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RT @cureSYNGAP1: Melissa — on the SRF Board — & her husband @MichaelSFoster1 shared their #SYNGAP1 story with @fox4kc for #Rarediseaseday.….
fox4kc.com
A family in Mission Hills has made it their mission to help after their daughter was diagnosed with a rare disease.
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RT @cureSYNGAP1: .@CoreyBaysden - our leader for community engagement - shares her family’s #SYNGAP1 story! Every bit of awareness helps.….
wnct.com
NEWPORT, N.C. (WNCT) – Tuesday was Rare Disease Day and one family in Eastern North Carolina knows all too well what it’s like to battle one. Saylor Baysden is 5 years old. Just l…
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RT @Invitae: This #RareDiseaseDay we invite you to take action with us. Your community can join the over 1k patients in Invitae’s Rare Pati….
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Today is #RareDiseaseDay2023, # 7 for us since Ty’s #Syngap1 diagnosis. Still no treatment or cure but getting closer every day thanks to @cureSYNGAP1 and all the #researchers and #pharma working on #SYNGAP1 . #Rare but not alone! There is hope!
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