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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
Friday Oct 01, 2021
Friday Oct 01, 2021
- Go see the SRF TikTok account: syngap.fund/tiktok.
- Find us everywhere at our handle @curesyngap1.
- It's October 1! #SYNGAP1 ICD-10 code F78.A1 is live TODAY. Ask all your clinicians to start using it. syngap.fund/F78A1
- Cannonball 5 DAYS . 3 dads driving across the US syngap.fund/cball #UFDcure.
- Consider donating to our fundraiser for RareBase syngap.fund/RB.
- #SYNGAP Census! There are 883 diagnosed Syngapians worldwide. This is +75 in the last 3 months. Learn more at syngap.fund/census.
- Medical Considerations Guide is up! www.syngapresearchfund.org/families/doctors.
- Oct. 23rd is the gala & auction in NJ. Dr. Ben Prosser and co-founder Ashley Evans will be speaking. syngap.fund/gala
- October Newsletter: read it here: syngapresearchfund.org/news.
- Sign up for this 10 minute #podcast #SYNGAP10 here syngap.fund/10
This was Episode 29 of #Syngap10 - October 1st, 2021
#F78A1 #ICD10 #UFDcure #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
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