Jess Fares

Mom to Cole, diagnosed with #SYNGAP1. Working hard with @curesyngap1 to improve lives of those with #epilepsy #SIB #autism #hypotonia #ID and their families!

[Jess Fares @Cure_Cole]

Representing #SYNGAP1 for #RareDiseaseDay! Syngap1 kids have a rare genetic mutation on chromosome 6 that causes #intellectualdisability #hypotonia #aggression #behaviors #seizures and #sensory issues on a daily basis. Show you #CareAboutRare and help us @cureSYNGAP1!

[Jess Fares @Cure_Cole]

@fastercures @cureSYNGAP1 Great news!! Thank you for including #SYNGAP1 in your network!

[Jess Fares @Cure_Cole]

@JillianLMcKee @AmEpilepsySoc @cureSYNGAP1 @IngoHelbig @JulieXXian @CHOP_Research @CHOPDBHi @PennNeurology Cole says congrats and is so thankful for your work on SYNGAP1!

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

Thank you @VickyAArteaga & Paulina for representing #SYNGAP1 🧠🧬at @SMNPediatrica. Our population is underdiagnosed everywhere and we need to raise awareness in Mexico 🇲🇽 and across Latin America.
#FondoSyngap

[Mike Graglia 🌻 @JMGraglia]

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.

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

Congrats to Dr. Frazier @JohnCarrollU for this AJMG pub - supported in small part by @cureSYNGAP1 - laying a foundation for NET.

https://t.co/OvZmMtWiGv

Fig. 3 has #SYNGAP1 alongside PTEN, NFIX, NGDS = GRIN2B CSNK2A1 HIVEP2 SCN2A MED13L STXBP1 & ADNP.

Note CB, Sleep & QOL.

[Jess Fares @Cure_Cole]

@cureSYNGAP1 @BostonChildrens @Axonis_US @SVH_neuro @KadamLab @JMGraglia So excited for this news!!! Thanks to everyone for the commitment to helping Cole and other people with SYNGAP1!

[Jess Fares @Cure_Cole]

Keep the good news coming!! 🙌🏻🤩🧬

[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]

1Q23 #SYNGAPcensus = 🌏1,215
Details: https://t.co/hzYKwuaPpr

🇺🇸343
🇬🇧119
🇩🇪99
🇫🇷95
🇨🇳75
🇳🇱46
🇪🇸39
🇨🇦38
🇦🇺35
🇮🇹33
🇵🇱31
🇧🇷🇷🇺22
🇰🇷21
🇸🇪🇨🇭🇩🇰12
🇧🇪🇳🇴🇦🇷11
🇨🇴10
🇵🇹9
🇮🇪8
🇹🇷7
🇨🇱🇫🇮6
🇮🇱🇸🇮🇲🇽5
🇪🇪🇦🇹🇮🇳🇪🇬4
🇧🇾🇯🇵🇨🇿🇷🇸🇩🇴🇭🇺🇬🇷3
🇭🇰🇷🇴🇸🇷🇲🇦🇺🇦🇲🇾🇧🇦🇸🇰🇸🇬🇦🇪2
🇹🇹🇩🇿🇻🇪🇭🇷🇽🇰🇸🇦🇲🇨🇶🇦🇳🇿🇦🇲1
If we missed you, let us know!

[Jess Fares @Cure_Cole]

@cureSYNGAP1 @epilepsia @NadavAhituv @navneetkmatharu Great news to celebrate #RareDiseaseMonth!! Cole is so thankful that #SYNGAP1 treatments are getting closer 💜💚💙

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

RegEl Therapeutics announces T3 Platform & development pipeline as well as expanding BoD & SAB.

CNS Pipe:
🧬 #SCN1A
🧬 #SCN2A
🧬 #SYNGAP1 💥

Bravo @epilepsia @NadavAhituv @navneetkmatharu & team!

https://t.co/4H8iTFYIAF

[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" 💚💜💙

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

Incredible. So much data based knowledge on one page. This is the power of @ciitizen, part of @Invitae. Bravo to @JillianLMcKee & @IngoHelbig of @ChildrensPhila for this exceptional work.

All #SYNGAP1 patients should sign up at https://t.co/T1sIgxs4PK

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

What are the next big genes and why aren't you working on them yet?

EARLY CAREER GRANTS via @AmEpilepsySoc apps due 1/12/23.

@cureSYNGAP1 is a partner & will happily consider partial/full funding via this process.

https://t.co/kmJXco2GpY

#SYNGAP1 🧬
#NeuroTwitter #epilepsy

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

Top shelf @FOXNashville profile of a #SYNGAP1 family in TN. Jackie Kancir, Jadyne's mom, sets the bar for advocacy. We are grateful for her leadership and example to our @cureSYNGAP1 community. We must all make the world better for our kids. https://t.co/ZpxJ7qVCsM

[Jess Fares @Cure_Cole]

When you don’t know how loved you are.
But I do. I know this is a visual representation of the love that surrounds Cole. I know that with #SYNGAP1 you need more than a village. And I know that we are beyond lucky to have ours ♥️
#family #autism #surroundedbylove

[Ed Gabler @ergabler]

Drinks & snacks @Nudieshonkytonk after #Nashville SRF Conference Day1. Privileged to spend part of the evening with @OnceUponAGene, @LauraPalmer712 & @Cure_Cole. TY hosts @SLC6A1_Mom, @Invitae, @combined_brain, & @cureSYNGAP1!

For you, Cole!

[Fink Lab @FinkLab]

Happening now!

Paula Vij is ready to discuss #CRISPR activation of #SYNGAP1 at B25

#SfN22 @UCDavisGrad @UCDavis_Neuro

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

New blog post from SRF: "Travels with Tony: A Trip to the EEG Lab"

➡️https://t.co/p9f3sAgrvA

#SYNGAP1 #CareAboutRare #PatientAdvocacy #Neurology #Genetics #epilepsy #autism #raredisease #specialneeds #EEG #study

[The Notorious EEG (M. Scott Perry MD) @TheNotoriousEEG]

Want to know why I love caring for kids with rare #epilepsy? check out this story. Don’t underestimate the power of parents determined to cure their kids!

Dads Drove > 57 H, Livestreamed the Cross-Country Trip & Raised $156K for Rare Genetic Disease https://t.co/aG0GRvgFx4

[Brett @ UFD Tech @UFDTech]

Finally halfway home!!! Looking forward to the back half tremendously.
We’re still raising money to help cure my son & other Syngapians. We’re less than $9K away from a huge matching $25K donation, and then I lose my eyebrows!
Come join: https://t.co/bj0soFg16D