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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 Jul 09, 2021
Friday Jul 09, 2021
#SYNGAP10 - Ep. 18 - "Seizures, Communication, Behavior, Sleep, Other" Is that right?
- https://Syngap.Fund/CTR - $26k and growing.
- Birthday Fundraisers, $25 per $250, we will find and thank you!
- https://Syngap.Fund/blog - Make sure to read the latest on variants
- Events: Webinar & Meetups
- https://syngap.fund/webinar - Next week, Saturday, July 17th @ 9 Pacific.
- San Diego Family Meetup - SRF Syngap Meet-Up, July 28th @ 3 pm, Details in SRF NA Group.
- Beach Haven, NJ Meetup - August 1st 11-5, details in the SRF NY Group. Caren will come! https://Syngap.Fund/caren t-shirts.
- 121 Warriors - https://syngap.fund/warrior - Egypt, Texas, Quebec & Argentina. Great work.
- We are working on a poster for a meeting, stay tuned, we are learning it’s not easy to explain this life… a couple of stories
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- Order of Symptoms
- 8 weeks from Seizure to Dx in Ireland, wow, 3.5. Great work Temple St, Dublin.
- Meds overload. Always check levels and loop with doctors…
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