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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Tuesday Mar 11, 2025
Tuesday Mar 11, 2025
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
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
Citizen Health - https://www.citizen.health/partners/srf or http://curesyngap1.org/citizen
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
Bio-Repository and Roadshow Dates
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April 24-25th |
Nashville, TN |
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June 14-15th |
Westminster, CO |
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June 18-21th |
St. Louis, MO |
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June 27-28th |
Phoenix, AZ |
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July 10-12th |
Boston, MA |
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July 18-19th |
Denver, CO |
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July 19-20th |
Westminster, CO |
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July 19-20th |
Windsor Locks, CT |
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Sept/Oct TBD |
Philadelphia, PA |
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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
DoD Funding
https://umdf.org/cdmrp_cuts_action/
#MEDICAIDCANTWAIT
https://thearc.org/policy-advocacy/medicaid/medicaidcantwait/
Episode 164 of #Syngap10
#Advocate #PatientAdvocacy #UnmetNeed #SYNGAP1 #SynGAP #SynGAProMMiS
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