?Full show notes: https://syngap.fund/n144  
 
CENSUS = 1,454 
https://curesyngap1.org/how-many-people-have-syngap1-census/
STX version! https://www.stxbp1disorders.org/news/stxbp1-census-q1-2024 
 
FUNDRAISING
Missense Account of the Fund
https://www.linkedin.com/posts/curesyngap1_syngap1-srd-autism-activity-7213973153071472640-uSYE
Explainer - https://www.youtube.com/watch?v=C9bGOA2MFHc 
Pipeline - https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/ 
Emmy 
https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research 
YOU?
https://curesyngap1.org/blog/fundraising-the-backbone-of-research/
 
PHARMA
https://www.longboardpharma.com/
http://longboardpharma.gcs-web.com/news-releases/news-release-details/longboard-pharmaceuticals-receives-breakthrough-therapy
 
CIRM
Petition - https://www.linkedin.com/feed/update/urn:li:activity:7210079591275626497 
Post - https://www.linkedin.com/posts/nashafitter_rareasone-activity-7212446744511414272-B8qx 
Talk - https://david293.substack.com/p/text-of-comments-by-mike-graglia 
 
HOPE - Caring for your SYNGAPian
Rainy’s drive - https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/ 
My visit - https://www.facebook.com/permalink.php?story_fbid=pfbid0SFg2Mx8jxkS8oeStYn5yqEhYgWVAhhQeX8WiSGQqhPcxpTgtyG1TtbaPMBMTAmVGl&id=100088305909698
Keto is powerful, and tricky https://curesyngap1.org/resources/webinars/keto-mad-syngap-parents-experience-syngap1/
Heat is not good - We need a blog here…
Adenoids and tonsils are an issue - https://curesyngap1.org/blog/syngap-sleep-you-could-be-one-more-test-away-from-helping-your-syngapian-thrive/ 
 
CLINICAL NETWORK / NHS UPDATE
COLORADO webinar next week! https://syngap.fund/Abbott
July 11, 2024 at 9 Pacific.
 
CALIFORNIA SYNAPTOPATHY CLINIC (CSC) starting to see patients, if you are in CA call them.
https://curesyngap1.org/blog/srf-announces-stanford-launches-california-synaptopathy-clinic/
 
CALENDAR MANAGEMENT
Rare Across America is 34 days away, registration ends in 10 days!
https://everylifefoundation.org/rare-advocates/rare-across-america/ 
 
Conference is 156 days away & Registration is live!
https://curesyngap1.org/events/conferences/syngap1-conference-2024/
https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf 
 
SHOUTOUTS
JACKIE NEW ED OF NCSA
https://www.ncsautism.org/blog/ed
Jess, Zoe, Lauren, Ed, Suzanne, Heather, Corey… 
 
CB Blood Donation accelerates Science!
STXBP1 conference (Philadelphia, PA, July 19-21, 2024)
Myhre Syndrome conference (Philadelphia, PA, July 27-28, 2024)
HNRNPH2 conference (Seattle, WA, July 29-30, 2024)
PWS/USP7 conference (Atlanta, GA, September 26-27, 2024)
COMBINEDBrain conference (Kansas City, MO, September 29th, 2024)
SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)
 
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources

SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US
 - 1,040 YouTube.  https://www.youtube.com/@CureSYNGAP1 
 - 3,660 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
- 10,659 Twitter https://twitter.com/cureSYNGAP1
- 48k Insta https://www.instagram.com/curesyngap1/
- 415 TikTok https://www.tiktok.com/@curesyngap1


Podcasts, give all of these a five star review!
SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

Episode 144 of #Syngap10 - July 2, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1