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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 Jun 28, 2022
Tuesday Jun 28, 2022
WEBINARS
- Susan on Fundraising: https://syngap.fund/susan
- Go to the CIITIZEN Webinar tomorrow (June 29th @ 11:30 ET) https://syngap.fund/virginie
- Sign up! https://www.ciitizen.com/syngap1/
FUNDRAISERS
- SHARE & SUPPORT by Thursday, all funds matched in June! https://www.facebook.com/donate/435907651714018/336149052023430/
- MICE: Help us Make 2! https://syngap.fund/2mice
DRAVET WAS AMAZING
- Mike’s Tweet-threads about the event
- Day 1 https://twitter.com/JMGraglia/status/1540061343813885952
- Day 2 https://twitter.com/JMGraglia/status/1540339186187788289
- Day 3 https://twitter.com/JMGraglia/status/1540709603406540803
- DSF https://dravetfoundation.org/
- Conference https://dravetfoundation.org/events/dsf-conference/
- Dr. Andrade / AGE - https://www.uhnresearch.ca/researcher/danielle-andrade
- Dr. Perry & Dr. Papadelis at Cook Children’s
- Article about Perry/Cook https://www.checkupnewsroom.com/rare-disease-day-carter--many-patients-treated-cook-childrens-syngap-rare-disease-seizures/
- Dr. Perry on the Twitter: https://twitter.com/TheNotoriousEEG
- Link with the Dr. Papadelis study: https://www.cookchildrens.org/services/neurosciences-research/funding/
- Longboard
- https://www.longboardpharma.com/
- https://pacific.researchstudytrial.com/
- Epigenyx
- https://www.epygenix.com/
- Baraban Lab https://barabanlab.ucsf.edu/
- Clemizole Tweet https://twitter.com/JMGraglia/status/1540712480975884288
EVENTS
September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/
October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 65 of #Syngap10 - June 28, 2022
#CareAboutRare #CureDravet #DSFinDFW #Ciitizen #LongboardPharma #Epigenyx #CookChildrens #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
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