SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
My trip summary to CHOP.
Melissa and her family are remarkable. “Doing this for the next generation.”
Why are we afraid to hope? Because fear is winning. Everything comes from Fear or Love. Focus on the love. Feed that one.
https://www.demellospirituality.com/love-or-fear/
https://www.urbanbalance.com/the-story-of-two-wolves/
#UFDCure Cannonball - October 4-6
$128,075.83 so far at 83.6%
https://www.youtube.com/watch?v=ilnPIwVy6oY
https://www.syngapresearchfund.org/cannonball
https://x.com/UFDTech/status/1711488218636357818?s=20
Scramble - October 7, 2023
Have you read the Syngap Story on Julie yet?
52 Days until the Conference - Sign up by Halloween - We need head counts.
Registration & Hotels
Conference and Wild Type Shirts:
Share your time and blood too!
Sign up for ciitizen! Sign up for CHOP! Volunteer!
Give us 5 stars everywhere. Like Apple podcasts!
This is a podcast subscribe!
Episode 119 of #Syngap10 - October 9, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
How to tell your family about SYNGAP1
2021 by the numbers, 985 patients counted, exciting work ahead!
Let’s catch the Genetic Therapy Tsunami for SYNGAP1!
This is Real Life! Science is moving forward and we are on board
Let’s make sure SYNGAP1 is cured in our lifetime. It’s up to us.
Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional
Grateful for the incredible SRF team/family...
Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.
Multiple studies enrolling now, start with Ciitizen and keep going...
Gather and connect. Learn from those who have come before. Keep hope alive!
Gala. Webinar. Crypto SunBlocks. ICD 10 AND 11. Thank you. Sign up for Ciitizen by 11/15/21.
Coming in hot! BCH Grant putting Ciitizen to work & the Gala is next week!
Inspiring your community and raising awareness for SYNGAP1
F78.A1 is the ICD-10 code for 883 SynGAPians today! #UFDcure Cannonball in 5 days! Guest host, Ashley Frye
Keep growing our community, we need each other!
Rarebase explained and who is going to win the race, we don‘t care, we just need it fast.
The future is coming, let’s build it!
Hope is the smartest move!
Two conversations with the same conclusion...
Telling our story and why it matters.
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