Last day of Feb, b/c rarest day
What did we do?
Raised $25k!
Newsletter went out! Read and subscribe please https://twitter.com/cureSYNGAP1/status/1498256918371917824
Jess and Ray represented the Global Team at PWC/Edinburgh https://twitter.com/Cdnchick74/status/1498275297011056644
Jansen and Kimberly were shared, and that is a win for all of us.
https://variantyx.com/2022/02/25/jansens-story/
https://www.raredisease.org.uk/rduk-news/our-syngap1-story/
Announced #CouldItBeSyngap1 300+ already https://www.syngapresearchfund.org/post/syngap-research-fund-deploys-coulditbesyngap1-screening-tool-in-partnership-with-probably-genetic
Webinar madness!
Two down
https://www.syngapresearchfund.org/webinars/the-use-of-milk-exosomes-to-increase-the-expression-of-syngap1-expression-in-syngap1-mice
https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program -> https://syngap1.rare-x.org
Two to go
Saturday: https://www.syngapresearchfund.org/webinars/estrategias-para-quitar-el-panal
Thursday March 10th! https://www.syngapresearchfund.org/webinars/syngap1-service-dogs -> syngap.fund/julian -> https://secure.givelively.org/donate/syngap-research-fund-incorporated/service-dog-for-julian
SEVEN (7) New families this week
Six welcomed today in post https://www.facebook.com/groups/376862123195518/posts/939459816935743
One not on FB, but reached out after finding us… via this podcast! Yeah.
That’s right, there is a work outside of Facebook, we are on Twitter and LinkedIn and Tiktok and Youtube too!
Follow us everywhere with @cureSYNGAP1
We are doing a #followfriday on Twitter, so get on that, and meet some families and share your story… you never know where those go. https://twitter.com/cureSYNGAP1/status/1499751768435175429?s=20&t=CcoXMTECIG6MZVzRo-IXqg
And it’s good for studies. I could only talk about people who were in the public domain here: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant
Happy Birthday Kyle! syngap.fund/kyle Follow this channel: https://www.youtube.com/c/KelliKyle
Thank you to SAB and CAB
We have stellar advisors, check them out: https://www.syngapresearchfund.org/home/our-team/sab and https://www.syngapresearchfund.org/home/our-team/team-clinical-advisory-board
They are working hard looking at some of the seven grant proposal we received! It’s going to be a great investment in the future of our loved ones…
Sprint4Syngap!
2nd Annual #Sprint4Syngap is coming April 30, 2022, help us raise funds by starting a team and/or donating!
Sign up now: https://syngap.fund/sprint2022
Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/
What else?
ORCA, thank you Kali, we have one person left and then we are locked and loaded for the next phase of that important project.
Great meeting with Overcome and partnering on Canadian grants.
One family, older, needed a neuro and we got them hooked up in a day. Love it.
One more survey, if you can for our friends at CNF: https://syngap.fund/cnf22
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 herehttps://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 50 of #Syngap10 - March 5, 2022
#s10e50 #sprint4syngap #CouldItBeSYNGAP1 #probablyGenetic #SYNGAP1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
