SynGAP10 weekly 10 minute updates on SYNGAP1
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You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.
You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.
HEADLINE: YOU CAN”T DO THIS ALONE, DON’T TRY
-Please don’t try to muscle raising a SYNGAP1 child, connect with the community, share tricks, joys and sorrows. We cannot do this alone.
PLANNING
One parent just asked how to think about planning for the future, here is what I said.
- 3a. Are you going to live in this place for good? If so, get all over services in your state. The rules and realities vary considerably by state.
- 3b. If you are flexible, is there another place you could live and what are services like there? I've seen a few families take a deep breath, ask these questions and move.
WEBINARS
-An Introduction to Autism BrainNet Thursday, February 10 @ 9 am PT/12 pm ET https://syngap.fund/ABN
-The use of milk exosomes to increase the expression of SYNGAP1 expression in SYNGAP1 mice March 3, 2022 @ 9am PT/12pm ET https://syngap.fund/zempleni
SERVICE DOGS
SRF works with Meridus K9, if you are interested, please reach out to Cecilia! https://www.meridusk9.com/
FUNDRAISING IS ALWAYS IMPORTANT
- https://syngap.fund/hopeforhadley $12.5k
- https://Syngap.fund/joinforjackson $800
- https://Syngap.fund/raylan
2nd Annual #Sprint4Syngap is coming April 30, 2022.
- Sign up now: https://syngap.fund/sprint2022
- Get a shirt: https://www.bonfire.com/sprint-for-syngap-2022/
THIS IS A PODCAST - SUBSCRIBE!
- Subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10 if you want a direct link for Apple: https://syngap.fund/10a
Episode 46 of #Syngap10 - February 7, 2022
#servicedogs #braindonation #ciitizen #privacy #SYNGAP1 #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
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