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.
- Part of the answer is a simple SNT (special needs trust) and Life Insurance payable to the trust, this is more affordable than you think.
- The desire not to burden your other kids is natural, but not always helpful. I’d leave that up to them, in most of the families that I have had the privilege of getting to know… at least one sibling WANTS to step up, and plans their life accordingly. Look at Nancy, just watch https://syngap.fund/caren
- Regardless of money, all of our kids will need state services throughout their life if we don’t get a therapy into their brains (this is what SRF works on). And even then they will need support, but less. At this point, I would ask yourself two things:
– 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.
- Our kids don’t get less complicated, I think you have signed up for Ciitizen, but whoever cares for your loved one will be so grateful that you have put all his medical records in one place. https://ciitizen.com/Syngap1
- Get to know this community, we have a STRONG SRF Crew having other families close is huge. Not to mention they know the rules in your state (see #3a).
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
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
