Friday, November 15, 2024
SRF NEWS
- Busy week for Mike & Virginie: Citizen Health & Ultragenyx, not Milken. Sign up for Citizen Health https://www.citizen.health/partners/srf
- Growing our name https://curesyngap1.org/blog/syngap-research-fund-srf-announces-dba-cure-syngap1-a-new-era-in-the-search-for-a-cure/
- Financials updated with 2023 https://curesyngap1.org/finances/ Thank you Stefanie Decker!
- Newsletter #41 – https://Syngap.Fund/NL41 – About why we need a cure – quotes from our families
- We’re over 100 volunteer bios on the website! More being added every week! Great work Zoe! https://curesyngap1.org/team/
- Cafe SYNGAP1 e24 is up! Gloria Amparo Guzmán Cali, Colombia https://syngap.fund/Cafe
4MTx Announcement and direct impact on pipeline
- https://www.4mtx.net/news/4m-therapeutics-compounds-to-be-utilized-in-research-project-funded-by-national-institute-on-aging-bjebr
- https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/
- Speaking of small molecules, get this on Ravicti https://www.medrxiv.org/content/10.1101/2024.11.06.24316676v2
RESEARCH UPDATE
There are 306 papers on or related to SYNGAP1 since 1998, but 48 of those are in 2024!
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded
Latest is from Frazier!
https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.16112
Sign up for Frazier https://syngap.fund/eye2
More Grants at work Science:
- Key Missense Webinar next week https://curesyngap1.org/resources/webinars/virtual-and-experimental-approaches-to-the-pathogenicity-of-syngap1-missense-mutations/
- New study at CHOP – Phenotype of the Hispanic SYNGAP1 Family. Details (English or Spanish) at https://Syngap.Fund/CHOPEsp
- Bower family blog – Camden’s trip to CHCO – https://Syngap.Fund/CamCHCO
- Thank you Corey Baysden for getting the Studies so well organized! https://curesyngap1.org/resources/studies/
Conference – Conference is 18 days away!
- Lineup: Science Day lineup – https://x.com/curesyngap1/status/1851723428677456093
- Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/
- Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267
- Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner
FUNDRAISING
- Coast2Coast Challenge $120,642 Syngap.Fund/C2C
- Minted Cards – 20% discount, 15% to SRF, code FUNDRAISESYNGAP – https://Syngap.Fund/Minted
- FUNDRAISE https://syngap.fund/FR
- CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/
VOLUNTEER SPOTLIGHT:Amber Mickler
ZOOM BACKGROUND
https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing
VOLUNTEER
https://curesyngap1.org/volunteer-with-srf/
SOCIAL MATTERS
– 1,220 YouTube. https://www.youtube.com/@CureSYNGAP1
– 3,847 LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 11,815 Twitter https://twitter.com/cureSYNGAP1
– 47k Insta https://www.instagram.com/curesyngap1/
– 442 TikTok https://www.tiktok.com/@curesyngap1
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
Podcasts, give all of these a five star review!
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 154 of #Syngap10
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1