SynGAP10 weekly 10 minute updates on SYNGAP1
By Syngap Research Fund, 501(c)(3)
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Episodes: 139
Description
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/
| Episode | Date |
|---|---|
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SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
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Apr 23, 2024 |
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Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
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Apr 04, 2024 |
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Stoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
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Mar 26, 2024 |
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SYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is discovering SYNGAP. #Sprint4SYNGAP 2024 is on! Fitter at the WH. #S10e136
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Mar 16, 2024 |
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#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
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Mar 05, 2024 |
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A very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
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Feb 24, 2024 |
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What is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called? #S10e133
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Feb 14, 2024 |
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Congratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
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Feb 07, 2024 |
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SYNGAP1 is complex, we need to partner with our clinicians to improve care & get ready for repurposing. #S10e131
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Jan 23, 2024 |
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2024 is off to a GREAT start. Time to get clinical, let’s get all these studies oversubscribed and make sure industry knows we are ready. #S10e130
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Jan 13, 2024 |
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Happy New Year! Happy 10th Birthday Tony! Congrats #Longboard. Publication update. Good feedback and frustrating stories. #S10e129
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Jan 05, 2024 |
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Over the break: Studies to do, Research & Press to read, Funds to raise, Resources to update, Resolve to Volunteer #S10e128
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Dec 23, 2023 |
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Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team. +Support Harper #JuggleIsReal - #S10e127
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Dec 15, 2023 |
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A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126
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Dec 13, 2023 |
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ICD-11, SYNGAP1 Adult Paper & Study, AES, #SyngapConf, Frazier Eye Tracking Study - #S10e125
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Dec 06, 2023 |
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Giving Tuesday, #SyngapConf, #FasterCures & Happy Thanksgiving - #S10e123
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Nov 19, 2023 |
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The more we own our EEGs, the sooner we get a biomarker. Simple. And remember to get Dinner tickets for the conference! - #S10e123
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Nov 03, 2023 |
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Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials. Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier
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Nov 01, 2023 |
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SYNGAP1 Missense Variants: SRF Awards Turku $100,000 to Investigate Using Structural Bioinformatics - #S10e121
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Oct 25, 2023 |
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Meetings Matter. Join this community at the #SyngapConf. The Gala was a hit (again). And our report from #PCEM2023. Vicky’s at #Bio - #S10e120
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Oct 24, 2023 |
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“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble - #S10e119
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Oct 10, 2023 |
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#SyngapCensus, #UFDCure Cannonball, Scramble, PRAX-222 & ciitizen, and a #mustread — #S10e118
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Oct 04, 2023 |
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Plan on #RDW now, it’s been a banner week for high quality SYNGAP1 info - Cannonball is next week! — #S10e117
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Sep 29, 2023 |
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Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116
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Sep 19, 2023 |
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Katrien Deckers reflects on European 🇪🇺 Epilepsy Conference - #S10e115 (Volume up)
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Sep 17, 2023 |
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Naya, Pods, ILAE, Warriors, Talking to Pharma, Monica H. is doing Cannonball! Another week in Syngap-land — #S10e114
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Sep 10, 2023 |
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Fondo sets the bar for LatAm Engagement, Samar’s interview, Andrade’s paper, the 2nd Soiree was a hit, grants are rolling in! — #S10e113
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Sep 02, 2023 |
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Stanford Grant, CSC, UCSF Study, SYNGAP1 Case Report, Conference - #s10e112
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Aug 18, 2023 |
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So much news, double catch up episode. #S10e111
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Aug 12, 2023 |
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Adam’s Camp is amazing & so are compression vests #S10e110
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Jul 31, 2023 |
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FAQs for SRF’s SYNGAP1 Conference 2023 #SYNGAP1 #SRFconference #Orlando #S10e109
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Jul 20, 2023 |
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Happy Birthday SRF! Five years of making the future better! #FasterCures #UCLA #EEG #S10e108
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Jul 14, 2023 |
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Inspiring Events, Family Video & Important Studies. *Note the CINEMAS TRIAL for Epidiolex - #S10e107
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Jun 14, 2023 |
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THREE studies to join, animal models to celebrate, webinars to watch, TWO articles (Memphis & Chicago), blogs en español & pods to listen to, SO MANY EVENTS TO COME TO, also SRF in Mexico!
|
Jun 06, 2023 |
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This is the ENDD of excuses. Sign up for the CHOP ENDD Study - #S10e105
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May 19, 2023 |
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Connection for Science - #S10e104
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May 10, 2023 |
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All About #Sprint4Syngap 2023! #S10e103
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May 04, 2023 |
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McKee Data Webinar on Thursday! #SPRINT4SYNGAP in 4 days! The Emergency Plan, DSF Caregiver Connect, PGx, Cool Paper, Biorepository Collection! #S10e102 #DNAday
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Apr 26, 2023 |
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SRF Supported Publication on NET, Siblings, Webinars, Frog Video, Clinical Trial Questions… #S10e101
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Apr 15, 2023 |
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💯Episode 100! Survey, GI, Biorepository, Press, PG, ASO Training, Sprint3 in 3 weeks!!! #S10e100
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Apr 09, 2023 |
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🌞🐒🐸SYNGAP1 is HOT: Gene Therapies, Monkey, COMBINEDBrain, Biorepository, Frazier, Frogs, 1,251 patients & studies #S10e99
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Apr 01, 2023 |
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Building the SYNGAP1 SRF House - using the Milken Fastercures Research Partnership Maturity Model - #S10e98
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Mar 24, 2023 |
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Talking to families with 2 year olds, 3 Webinars not to miss, and Sprint4Syngap, Stoke & Praxis Updates, GG Next 2023 Report - #S10e97
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Mar 16, 2023 |
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Rare Disease Day 2023 was epic and you should have been there. Sprint and Webinar update. #S10e96
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Mar 06, 2023 |
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Rare Disease Day 2023 - Hattie Video, Coller & McKee Webinars, Missense SYNGAP1 iPSC, $20k, Apply for a Grant, Sprint4Syngap, Join us. #S10e95
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Feb 28, 2023 |
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Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94
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Feb 23, 2023 |
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More on ENDD gift at Penn, but first, Finding SYNGAP1 Patients, Hotels & Grief in Florida - #S10e93
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Feb 14, 2023 |
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10 Reasons SYNGAP-land is hopeful & exciting today #S10e92
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Feb 08, 2023 |
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Why we need to keep talking about SYNGAP1 #S10e91
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Jan 31, 2023 |
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Seven Ways to advance SYNGAP1 Research this week. Post video, take survey, tell us your opinion on Rare-X/Simons, Update Ciitizen, #SRFWW, JR’s book, Plan. #S10e90
|
Jan 21, 2023 |
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JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89
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Jan 16, 2023 |
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New Grant, Rare Affair, SYNGAP1 research and events #S10e88
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Jan 10, 2023 |
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SRF 2022 Numbers, Great Press, a wonderful wedding. #S10e87
|
Jan 05, 2023 |
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#SYNGAPconf22 was a hit, join us in 2023… #S10e86
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Dec 29, 2022 |
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#AES2022 clearly showed us that SRF & SYNGAP1 have arrived… #S10e85
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Dec 29, 2022 |
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#ImpatientOptimism is the appropriate feeling for this moment… #S10e84
|
Nov 30, 2022 |
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#StokeTx just showed us the future & will open the SYNGAP1 meeting #S10e83
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Nov 22, 2022 |
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Soiree: Incredible, Boston: Fabulous; & two to-dos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82
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Nov 14, 2022 |
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SYNGAP-A-PALOOZA ‘22, NASHVILLE & a bit more on ASOs #S10e81
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Nov 10, 2022 |
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ASOs in the news, let’s discuss in Nashville! #S10e80
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Nov 01, 2022 |
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#UFDcure CANNONBALL2 is a wrap/half done. #S10e79
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Oct 24, 2022 |
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Event recaps with special guest hosts #S10e78
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Oct 13, 2022 |
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SYNGAP1 News: Boston Trip Report, Precision Neuroscience Summit and Relentless Progress. #S10e77
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Oct 05, 2022 |
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Every Patient Matters. Global Edition: SRF touching Ukraine/Poland 🇺🇦🇵🇱, Greece 🇬🇷, Colombia/LatAmerica 🇨🇴, Netherlands 🇳🇱 & UK 🇬🇧… #S10e76
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Sep 26, 2022 |
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We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾💻 Simons & Invitae #S10e75
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Sep 18, 2022 |
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Praxis + Ciitizen = PROGRESS #S10e74
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Sep 10, 2022 |
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Leon #S10e73
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Sep 02, 2022 |
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A day in the life of SRF: Greece, Ukraine, Rarebase, Zempleni #S10e72
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Aug 27, 2022 |
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THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71
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Aug 23, 2022 |
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YOU CAN HELP PRAXIS TO PREPARE FOR CLINICAL TRIAL READINESS FOR SYNGAP1 IN PARTNERSHIP WITH CIITIZEN & SRF
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Aug 12, 2022 |
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Why the Bowie grant is so exciting! Our second collaborative grant! #s10e69
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Jul 29, 2022 |
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This week was ripe with a promising future! #s10e68
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Jul 25, 2022 |
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Take time to grieve & then come back to this community to grow. #s10e67
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Jul 19, 2022 |
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Missense Variants are Finally Getting Attention. Reclassification. Grants. #S10e66
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Jul 06, 2022 |
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We are learning from the best - A read out from #DSFinDFW Conference. #S10e65
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Jun 28, 2022 |
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Throw the doors open, build your team, tell everyone. #S10e64
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Jun 14, 2022 |
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Are you coming to our conference in December? Some goodies to share with your favorite #RareDad - #S10e63
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Jun 07, 2022 |
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BONKERS week. #S10e62
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May 29, 2022 |
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Thank Goodness we have a dynamic team! Some personal news. #S10e61
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May 24, 2022 |
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Major Preprint from Quadrato & Coba, Rumbaugh working with Praxis, Keep Fundraising! #S10e60
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May 14, 2022 |
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We raise funds, make mice & they make preprints! It’s working! #S10e59
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May 09, 2022 |
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Praxis Announces SynGAP Program & #Sprint4Syngap is a global success!. #S10e58
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May 02, 2022 |
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We need funding, companies and doctors. #S10e57
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Apr 26, 2022 |
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Why will companies work on #SYNGAP1? #S10e56
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Apr 19, 2022 |
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#Sprint4Syngap is just 3 weeks away! #S10e55
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Apr 10, 2022 |
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LOTS OF NEWS - 1055 Patients, it’s #SyngapCensus Day! #S10e54
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Apr 01, 2022 |
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Happy Epilepsy Awareness Day! #S10E53
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Mar 25, 2022 |
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We are starting to find lots of adult patients, what now?
|
Mar 21, 2022 |
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Putting this work in perspective…
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Mar 15, 2022 |
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Another week in 5th gear, buckle up
|
Mar 05, 2022 |
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Rare Disease Day is Monday! And here at SRF we can feel it all happening…
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Feb 25, 2022 |
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Happy National Caregiver Day!
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Feb 18, 2022 |
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It’s all coming together - data, trials, research. Time is now to join in!
|
Feb 15, 2022 |
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You can’t do this alone, don’t try. But do Plan. Lots of planning from SNTs to Brain Donation to Service Dogs.
|
Feb 07, 2022 |
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Old School Syngap10 - Lots of great content in 10 minutes. Fundraising. Blogs. Webinars. Patient stories. Ciitizen.
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Jan 28, 2022 |
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Special Double Episode: Understanding your particular variant and what to do about it (Hint: #iPSC)
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Jan 27, 2022 |
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Stoke Therapeutics & Acadia Pharmaceuticals are working on SYNGAP1 #S10e43
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Jan 14, 2022 |
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How to tell your family about SYNGAP1
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Jan 07, 2022 |
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2021 by the numbers, 985 patients counted, exciting work ahead!
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Dec 31, 2021 |
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Let’s catch the Genetic Therapy Tsunami for SYNGAP1!
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Dec 18, 2021 |
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This is Real Life! Science is moving forward and we are on board
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Dec 11, 2021 |
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Let’s make sure SYNGAP1 is cured in our lifetime. It’s up to us.
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Dec 04, 2021 |
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Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional
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Nov 27, 2021 |
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Grateful for the incredible SRF team/family...
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Nov 20, 2021 |
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Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.
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Nov 12, 2021 |
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Multiple studies enrolling now, start with Ciitizen and keep going...
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Nov 05, 2021 |
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Gather and connect. Learn from those who have come before. Keep hope alive!
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Oct 30, 2021 |
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Gala. Webinar. Crypto SunBlocks. ICD 10 AND 11. Thank you. Sign up for Ciitizen by 11/15/21.
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Oct 22, 2021 |
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Coming in hot! BCH Grant putting Ciitizen to work & the Gala is next week!
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Oct 15, 2021 |
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Inspiring your community and raising awareness for SYNGAP1
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Oct 08, 2021 |
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F78.A1 is the ICD-10 code for 883 SynGAPians today! #UFDcure Cannonball in 5 days! Guest host, Ashley Frye
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Oct 01, 2021 |
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Keep growing our community, we need each other!
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Sep 24, 2021 |
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Rarebase explained and who is going to win the race, we don‘t care, we just need it fast.
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Sep 17, 2021 |
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The future is coming, let’s build it!
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Sep 10, 2021 |
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Hope is the smartest move!
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Sep 03, 2021 |
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Two conversations with the same conclusion...
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Aug 28, 2021 |
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Telling our story and why it matters.
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Aug 20, 2021 |
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Webinars, Mugs, Blog, GCs, Ciitizen, Cure, OUAG, CTR
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Aug 13, 2021 |
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Connection is everything!
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Aug 03, 2021 |
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Great things afoot! Join us. - Episode 20 of #Syngap10 - July 23rd, 2021
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Jul 23, 2021 |
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Let’s @cureSYNGAP1 - Episode 19 of #Syngap10 - July 16th, 2021
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Jul 16, 2021 |
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”Seizures, Communication, Behavior, Sleep, Other” Is that right? - Episode 18 of #Syngap10 - July 9th, 2021
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Jul 10, 2021 |
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Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021
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Jul 02, 2021 |
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Put your mask on first. - Episode 16 of #Syngap10 - June 25, 2021
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Jun 25, 2021 |
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Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021
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Jun 18, 2021 |
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Community and #SYNGAPlove - Episode 14 of #Syngap10 - June 11, 2021
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Jun 12, 2021 |
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Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. - Episode 6 of #Syngap10 - April 16th, 2021
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Jun 07, 2021 |
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The things we do for LOVE! - Episode 13 of #Syngap10 - June 4th, 2021
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Jun 04, 2021 |
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IPSCs, Ciitizens, Sleep Webinar, NET Webinar, Birthday Party on FB! - Episode 12 of #Syngap10 - May 28th, 2021
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May 28, 2021 |
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We must be hopeful - and it makes sense to be so. - Episode 11 of #Syngap10 - May 21st, 2021
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May 22, 2021 |
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Scales, Grands, Ciitizens, Kayo, iPSC - Episode 10 of #Syngap10 - May 14th, 2021
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May 14, 2021 |
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Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021
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May 07, 2021 |
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BREAKING NEWS 🚨re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021
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Apr 30, 2021 |
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Sprint. BCH. Ciitizen. Meetings. Clicks. Docs. Wed. Volunteer! - Episode 7 of #Syngap10 - April 23rd, 2021
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Apr 23, 2021 |
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EEG Biomarkers, SSB Study, Ciitizen, CNF Survey, Sprint4Syngap - Episode 5 of #Syngap10 - April 9th, 2021
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Apr 09, 2021 |
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Ciitizen Study happening! #SyngapCensus = 762, Caren, Kyle & Sprint4Syngap - Episode 4 of #Syngap10 - April 2nd, 2021
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Apr 02, 2021 |
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Webinars, Warriors, Work, Caren subtitles & Sprint4Syngap - Episode 3 of #Syngap10 - March 29th, 2021
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Mar 26, 2021 |
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Mike updates Syngap Families on the work of SRF. - Episode 2 of #Syngap10 - March 19th, 2021
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Mar 19, 2021 |
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Mike Graglia updates Syngap Families on the work of SRF. - Episode 1 of #Syngap10 - March 12th, 2021
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Mar 13, 2021 |