Tuesday, March 11, 2025 - Week 11

CHCO Press Release

https://www.linkedin.com/posts/curesyngap1_syngap1-prommis-research-activity-7305258171642654723-5h2e fill spots, email info@curesyngap1 dot org

SYNGAP1 ProMMiS #SynGAProMMiS

https://curesyngap1.org/resources/studies/syngap1-prommis/

Need your Voice on Unmet Need

Please contact me with stories and permission to share. Mike@ 

PubMed is at 11 YTD

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&timeline=expanded&sort=date&sort_order=asc

Willsey Lab on Gut Motility, congratulations to Kate McCluskey

https://pmc.ncbi.nlm.nih.gov/articles/PMC11885846/pdf/41467_2025_Article_57342.pdf

Citizen Health Data in there!

https://www.linkedin.com/posts/citizen-health-inc_citizenhealth-autism-guthealth-activity-7304881198676197376-ng3v

Family Conf Video on Drug Repurposing

https://www.youtube.com/watch?v=1S_A1jO28-c - Corey, Lindsay, Zoe and Earl.  

Thank you Lindsay.

Unravel BioSciences Discussion/Podcast

Short: https://www.youtube.com/watch?v=xcB8pv2lKRI

Long: https://www.youtube.com/watch?v=CYb0ghaRKm8 

LinkedIn: https://www.linkedin.com/posts/unravel-biosciences_raredisease-combinedbrain-drugdevelopment-activity-7302440189782540289-u4sl

Bio-Repository and Roadshow Dates

https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit#slide=id.g32f5fa46d32_0_3

April 24-25th

Nashville, TN

June 14-15th

Westminster, CO

June 18-21th

St. Louis, MO

June 27-28th

Phoenix, AZ

July 10-12th

Boston, MA

July 18-19th

Denver, CO

July 19-20th

Westminster, CO

July 19-20th

Windsor Locks, CT

Sept/Oct TBD

Philadelphia, PA

Dec 4-5th

Atlanta, GA

Share glowing reviews of SRF on Great Non-Profits!

https://www.cureSYNGAP1.org/GNP

ICD-10’s as discussed in #S10e163 (https://www.youtube.com/watch?v=iDvW7HfzSGA) next meeting cancelled.  Time to go for ICD-11s.

https://www.cdc.gov/nchs/icd/icd-10-maintenance/meetings.html

https://umdf.org/cdmrp_cuts_action/

#MEDICAIDCANTWAIT

https://thearc.org/policy-advocacy/medicaid/medicaidcantwait/

Episode 164 of #Syngap10 

#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS