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Another week in 5th gear, buckle up

Another week in 5th gear, buckle up

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Another week in 5th gear, buckle up

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
20 minutes
Released:
Mar 5, 2022
Format:
Podcast episode

Description

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/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 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
Released:
Mar 5, 2022
Format:
Podcast episode

Titles in the series (100)

Over 900 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/