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PODCAST

CURE SYNGAP1 Podcast

Mike Graglia, CURE SYNGAP1

The CURE SYNGAP1 Podcast is a weekly blog to keep parents and families up to date on what the team at CURE SYNGAP1 is doing to advocate for patients and advance research into SYNGAP1. If you do nothing else, listen to or watch this and let us know what you think. There are over 1,675 diagnosed patients on earth according to SRF"s #SyngapCensus. If you are related to one of those patients or are a researcher or clinician interested in SYNGAP1, this podcast is for you. Learn more at

business non-profit

All Episodes

00:09:57

Why we need to keep talking about SYNGAP1 #S10e91

CURE SYNGAP1 Podcast ·

2023/01/31

Why we need to keep talking about SYNGAP1 #S10e91 Press is good! - Short link: https://syngap.fund/nw - Long link: https://www.newsweek.com/my-son-syngap1-rare-genetic-condition-1776362 Jo Ashline in Invitae: https://blog.invitae.com/finding-andrews-truth-a-family-s-unexpected-rare-disease-diagnosis-e21e97da6baf Episode 90 was good, remember to listen, #S10e90 https://www.youtube.com/watch?v=Mp4jHg-GXjE Ciitizen is over 200! Update your Ciitizen Records - Sign-IN https://app.ciitizen.com/ -

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00:11:54

Seven Ways to advance SYNGAP1 Research this week....

CURE SYNGAP1 Podcast ·

2023/01/21

Seven Ways to help: - Post a video with a seizure - Take a 10 minute survey - Tell us how you feel about Simons and Rare-X - Signup for or Update Ciitizen - Signup for or share a Wednesday Warrior - Buy JR’s book and give it to someone - Plan your fundraiser this year Videos of kids with seizures. #SYNGAPseizure #biomarker Help Research with this brief survey. Tell a friend and share these links - 150 & counting, $50 each. - Short link: https://syngap.fund/UCSF_survey - Long link:

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00:10:55

JR’s book, ORCA & RareX, Data talks, Update Ciitizen,...

CURE SYNGAP1 Podcast ·

2023/01/16

JR WEBINAR - MORE OF EVERYTHING - BOOK - Thursday January 17, 2023 - https://syngap.fund/jr - Direct link: https://us02web.zoom.us/webinar/register/WN_EMzPKDWiRluBMmslT0wpdA ORCA Progress and Rare-X - Sign up now and if signed up, take the ORCA. - Login/Signup for Rare-X https://syngap1.rare-x.org/ - Take the ORCA Ingo’s CNS talk shows us what is possible with Ciitizen Data, other data. And how distinct SYNGAP1 is… Thread https://twitter.com/JMGraglia/status/1612978647107002368 Distinct

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00:12:29

New Grant, Rare Affair, SYNGAP1 research and events ...

CURE SYNGAP1 Podcast ·

2023/01/10

NEW GRANT - Cobb & Kind #AAV Grant by SRF US & UK LinkedIn https://www.linkedin.com/feed/update/urn:li:activity:7016828620451053568 Twitter https://twitter.com/cureSYNGAP1/status/1611059709301362688 Facebook https://www.facebook.com/cureSYNGAP1/posts/pfbid02McP84y7CP3FuGVS9huTGmP7A5NBGr6AQn26pYih1y3WptpVuDkRD118V65NpMQrWl Announcement

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00:12:08

SRF 2022 Numbers, Great Press, a wonderful wedding....

CURE SYNGAP1 Podcast ·

2023/01/05

SRF BY THE NUMBERS IN 2022 Twitter https://twitter.com/JMGraglia/status/1610633778015383552 Source https://www.syngapresearchfund.org/post/srf-2022-the-year-in-review-by-the-numbers GREAT PRESS Diagnosis of a 40 year old #SYNGAPian Twitter https://twitter.com/cureSYNGAP1/status/1610656947447169025 Facebook https://www.facebook.com/cureSYNGAP1/posts/pfbid02mur5g8SLEwjNNWafdQCzEJdUxRshVL4zwE1qRdZdHyTUHUrnFXU5D11JNJBew3Nkl LinkedIn

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00:15:08

#SYNGAPconf22 was a hit, join us in 2023… #S10e86

CURE SYNGAP1 Podcast ·

2022/12/29

PREREGISTER FOR NEXT YEAR https://twitter.com/cureSYNGAP1/status/1608462863819067397 https://docs.google.com/forms/d/e/1FAIpQLSfetAr8YH41nbJrJy1uXqJeS37nQD6khjDn-LiFxIWo5oUBjA/viewform Buy this book on Amazon or on JR’s website - #MoreOfEverthing by JR https://janiereade.com/ https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL JACKIE KANCIR

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00:11:04

#AES2022 clearly showed us that SRF & SYNGAP1 have...

CURE SYNGAP1 Podcast ·

2022/12/29

Dr. Grinspan on AES https://www.neurologylive.com/view/partnering-clinicians-parents-motivator-pediatric-epilepsy-research-zachary-grinspan Ana Mingorance on SYNGAP1 and #EscapeVelocity https://www.draccon.com/dracaena-report/aes2022 Dr. Dennis Lal on AES & Genetics https://twitter.com/LalDennis/status/1600617199110070286 Mike’s Talk at

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00:13:59

#ImpatientOptimism is the appropriate feeling for...

CURE SYNGAP1 Podcast ·

2022/11/30

#InpatientOptimism is the appropriate feeling for this moment… #S10e84 Targeting Epilepsy Meeting at St. Jude: https://www.stjude.org/research/initiatives/pediatric-translational-neuroscience-initiative/targeting-epilepsy-translating-advances-in-research-to-genetic-epilepsy-therapy.html Praxis and PRAX-562 for #SCN2A and #SCN8A https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-advance-prax-562-phase-2-study Go Team Canada and Overcome for Bowie

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00:19:34

#StokeTx just showed us the future & will open the...

CURE SYNGAP1 Podcast ·

2022/11/22

I am #StokedAboutStoke BW Press Release with Link to their presentation: https://www.businesswire.com/news/home/20221114005268/en/Stoke-Therapeutics-Reports-Third-Quarter-Financial-Results-and-Provides-Business-Updates Stoke announced partnership with Acadia in Episode 43 of Syngap10… https://www.youtube.com/watch?v=jElXobgYfCQ Register for our meeting on December 1 in

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00:10:36

Soiree: incredible, Boston: Fabulous & two todos...

CURE SYNGAP1 Podcast ·

2022/11/14

ATLANTA was an incredible event and a success for more reasons than you think - Check out this video: https://www.youtube.com/watch?v=NEEob7CzlfY - Family connection is everything - Raised funds from Atlanta community, it’s us folks. Real but not True: https://www.psychologytoday.com/us/blog/finding-true-refuge/201702/real-not-true BOSTON dinner, last night, was magical too. Check out this video: https://www.facebook.com/634352803/videos/512400737470459/ You have a WEEK to do RARE-X! Data to

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00:14:10

SYNGAP-A-PALOOZA ‘22, NASHVILLE & a bit more on ASOs...

CURE SYNGAP1 Podcast ·

2022/11/10

ATLANTA: 11/12 https://cbo.io/bidapp/index.php?slug=syngap Stoke Update on STK-001 Phase 1/2a studies https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-host-webinar-and-conference-call-present PMC 11/14-15 https://www.personalizedmedicinecoalition.org/events/Events/Personalized_Medicine_and_the_Patient 188+ Medical Records Matter: Sign up for CIITIZEN: https://www.ciitizen.com/syngap1/ SYNGAP1 ANNUAL MEETING aka “SYNGAP-A-PALOOZA” NASHVILLE 12/1 & 2

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00:16:12

ASOs in the news, let’s discuss in Nashville! #S10e80

CURE SYNGAP1 Podcast ·

2022/11/01

Medical Records Matter: Sign up for CIITIZEN: https://www.ciitizen.com/syngap1/ Thx Alok: https://twitter.com/aloktayi/status/1587093289156517888 CANNONBALL 2.0 - $156,802 Press: https://www.cnbc.com/2022/10/29/dads-road-trip-for-syngap1-raised-150000-for-rare-genetic-disease-.html Total: https://www.justgiving.com/fundraising/ufd-cftc-2022 Tweet: https://twitter.com/UFDTech/status/1585640994652889089 Interview with Prosser: www.youtube.com/watch?v=gFLEj_Uq1k8 Interview with Rarebase:

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00:09:54

#UFDcure CANNONBALL2 is a wrap/half done. #S10e79

CURE SYNGAP1 Podcast ·

2022/10/25

#UFDcure CANNONBALL2 is a wrap/half done. #S10e79 CANNONBALL! Donate now, it’s matched: https://www.justgiving.com/fundraising/ufd-cftc-2022 Brett talking about CB2 https://www.youtube.com/watch?v=2Wb0RO74UIo UPenn interview https://www.youtube.com/watch?v=gFLEj_Uq1k8 Twitch: https://www.twitch.tv/ufdisciple Brett: https://twitter.com/UFDTech Peter: https://twitter.com/phalliburton Kevin: https://fryereeves.com/kevin-w-frye/ VISITS Pavel:

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00:12:10

Event recaps with special guest hosts #S10e78

CURE SYNGAP1 Podcast ·

2022/10/13

EVENT RECAPS October 8th -New Jersey - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala - South Carolina - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap UPCOMING EVENTS 8 Days: - October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase NOVEMBER IS GIVING SEASON! 4 Weeks: - November 12 in GA - Sparks of Hope Gala

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00:09:51

SYNGAP1 News: Boston Trip Report, Precision...

CURE SYNGAP1 Podcast ·

2022/10/05

INCREDIBLE MEETING, THANK YOU GC FOR THE HOSPITALITY! https://www.linkedin.com/feed/update/urn:li:activity:6982842796319657984 https://www.forbes.com/sites/greglicholai/2022/10/03/renaissance-in-precision-neuroscience-expected/?sh=61d48fa0c8a3 GRANT ALERT Coller mRNA Work at Hopkins https://www.eurekalert.org/news-releases/966873 COMPANY UPDATE Stoke Tx https://www.stoketherapeutics.com/ Praxis Medicine https://praxismedicines.com/ Rarebase https://www.rarebase.org/ Beacon Biosignals

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00:09:32

Every Patient Matters. Global Edition: SRF touching...

CURE SYNGAP1 Podcast ·

2022/09/26

EVERY PATIENT MATTERS Lots of work with doctors these days. e.g. Tony: DOI: 10.1159/000492706 https://www.karger.com/Article/FullText/492706 e.g. Jaxon: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344 WE ARE GLOBAL SRF Site is now in all Languages! Ukraine/Poland 🇺🇦🇵🇱- https://www.syngapresearchfund.org/post/122-a-letter-of-thanks-from-a-ukrainian-syngap-family #S10e72 Greece 🇬🇷- Greek framily from #S10e72 now working

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00:09:53

We 💜Events, Drugs 💊 Rarebase & NOSpharma, Data 👩🏾‍💻...

CURE SYNGAP1 Podcast ·

2022/09/18

GLOBAL GENES WAS GREAT Panel was impressive, will be sharing when recording is live, one point was small molecules… #GlobalGenes #CareAboutRare EVENTS ARE COMING 3 weeks! 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 8 weeks! November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree 11

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00:09:51

Praxis + Ciitizen = PROGRESS #S10e74

CURE SYNGAP1 Podcast ·

2022/09/10

PRAXIS & CIITIZEN Webinar On-Demand Registration - https://pages.questexinfo.com/invitaereg09082022/ Twitter - https://twitter.com/cureSYNGAP1/status/1568223901628637184?s=20&t=_UdtyirDq-dfLJD9Eo3GPw/ Facebook - https://www.facebook.com/cureSYNGAP1/posts/pfbid02usJYQPSQEr5yrUkhkfmcwhfit6WLgUFK56VXCaEVypCuVvxNb74pnkTiXqgZsdFtl/ LinkedIn - https://www.linkedin.com/feed/update/urn:li:activity:6973995629647720448/ LEON Light a candle for Leon here

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00:09:54

Leon #S10e73

CURE SYNGAP1 Podcast ·

2022/09/02

SRF Page on Leon - https://www.syngapresearchfund.org/leon SRF Grant with Leon & Friends - https://www.eurekalert.org/news-releases/957967 Light a candle for Leon - https://www.bestattung-huettner.at/sterbefall/52048/ SRF on Social for Leon - https://www.facebook.com/cureSYNGAP1/posts/pfbid0RqALzmaTh8zGeT1KMUbfiXgv9o7PPR2JJPcZNPpR91ce7tYz5foWmb47652r8c2Ml - https://twitter.com/cureSYNGAP1/status/1564626096640901121 - https://www.linkedin.com/feed/update/urn:li:activity:6970394298483630080 This

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00:09:57

A day in the life of SRF: Greece, Ukraine, Rarebase,...

CURE SYNGAP1 Podcast ·

2022/08/27

0. SUPPORT OUR PATIENT IN UKRAINE Fundraiser: https://secure.givelively.org/donate/syngap-research-fund-incorporated/help-syngap-family-escape-ukraine/ Tweet: https://twitter.com/JMGraglia/status/1563362473327005698 1. LONGBOARD PHARMA & RAREBASE Watch #S10e71 https://www.youtube.com/watch?v=iPoOjKBwPfY 2. SEIZURE TRACKER Watch #S10e70 https://youtu.be/g6R9ejJnYbw More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 3. WEBINARS PRAXIS & INVITAE

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