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
Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140
SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
Stoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
SYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is discovering SYNGAP. #Sprint4SYNGAP 2024 is on! Fitter at the WH. #S10e136
#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
A very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
What is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called? #S10e133
Congratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
SYNGAP1 is complex, we need to partner with our clinicians to improve care & get ready for repurposing. #S10e131
2024 is off to a GREAT start. Time to get clinical, let’s get all these studies oversubscribed and make sure industry knows we are ready. #S10e130
Happy New Year! Happy 10th Birthday Tony! Congrats #Longboard. Publication update. Good feedback and frustrating stories. #S10e129
Over the break: Studies to do, Research & Press to read, Funds to raise, Resources to update, Resolve to Volunteer #S10e128
Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team. +Support Harper #JuggleIsReal - #S10e127
A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126
ICD-11, SYNGAP1 Adult Paper & Study, AES, #SyngapConf, Frazier Eye Tracking Study - #S10e125
Giving Tuesday, #SyngapConf, #FasterCures & Happy Thanksgiving - #S10e123
The more we own our EEGs, the sooner we get a biomarker. Simple. And remember to get Dinner tickets for the conference! - #S10e123
Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials. Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier
SYNGAP1 Missense Variants: SRF Awards Turku $100,000 to Investigate Using Structural Bioinformatics - #S10e121
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