Another week in 5th gear, buckle up
Post RDD –
– 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/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 here https://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
