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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

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All Episodes

00:11:50

SRF Roadmap Paper is published. Read and share with...

CURE SYNGAP1 Podcast ·

2025/01/15

Wednesday, January 15, 2025RESEARCH UPDATE There are 313 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024! So far 2 for 2025. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded Census = 1,530! https://cureSYNGAP1.org/Census, China was only 113, but now they are 246! Check out these social posts on our https://cureSYNGAP1.org/SRFPaper

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00:12:08

2025 is the year we double down on SYNGAP1. Tune in...

CURE SYNGAP1 Podcast ·

2025/01/10

2025 is the year we double down on SYNGAP1. Tune in now. - #S10e157Friday, January 10, 2025 NEWS Census = 1,530! https://cureSYNGAP1.org/Census https://cureSYNGAP1.org/NL42 All 2024 Science Conference videos (27 total) are now on our website and organized in this blog: https://cureSYNGAP1.org/SC24 Pods, listen to this: https://curesyngap1.org/podcasts/syngap1-stories/zoe-bailey/ AES JW - Everybody who was at AES felt the temperature change. Things are getting real and timelines are

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00:21:56

AES & SYNGAP1 Conf were great for SynGAP. 2 wks left...

CURE SYNGAP1 Podcast ·

2024/12/18

Tuesday, December 17, 2024 Cure SYNGAP1 Conference - Resounding success https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Summary: http://www.draccon.com/dracaena-report/2024aes A few comments: https://www.linkedin.com/posts/richardnovak_clinical-rare-activity-7270806450090786816-m0OV https://www.linkedin.com/posts/haley-tokars-1b2b38209_i-had-the-privilege-of-attending-my-first-activity-7272056324090159104-xFSZ

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00:17:17

Annie - #S10e155

CURE SYNGAP1 Podcast ·

2024/11/26

Tuesday, November 26, 2024Annie Passed yesterday #SynGAPAngel https://www.linkedin.com/posts/graglia_the-syngap1-community-is-at-a-loss-as-we-activity-7267225798602874880-W9hw?utm_source=share&utm_medium=member_desktop SRF NEWS Stories just keeps getting better: https://curesyngap1.org/podcasts/syngap1-stories/stacey-miller/ New family video, use YouTube auto translate: Juliana Meza https://www.youtube.com/watch?v=NLkqswEvAQs Two trials to consider

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00:14:39

Cure SYNGAP1 is firing on all cylinders! 4MTx, C2C...

CURE SYNGAP1 Podcast ·

2024/11/16

Friday, November 15, 2024 SRF NEWS Busy week for Mike & Virginie: Citizen Health & Ultragenyx, not Milken. Sign up for Citizen Health https://www.citizen.health/partners/srf Growing our name https://curesyngap1.org/blog/syngap-research-fund-srf-announces-dba-cure-syngap1-a-new-era-in-the-search-for-a-cure/ Financials updated with 2023 https://curesyngap1.org/finances/ Thank you Stefanie Decker! Newsletter #41 - https://Syngap.Fund/NL41 - About why we need a cure - quotes from

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00:09:57

Progress in Studies, Trials & Community Milestones;...

CURE SYNGAP1 Podcast ·

2024/11/02

STUDIES AND A TRIALFRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ CHANGES (UK) https://curesyngap1.org/resources/studies/changes-study-adults-an-investigation-into-behaviour-and-physiology-in-syngap1/ PNO https://curesyngap1.org/resources/studies/pregnenolone-treatment-trial-for-individuals-with-autism/ Science: Chow Press -

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00:29:55

The Coast 2 Coast Challenge benefiting the SYNGAP1...

CURE SYNGAP1 Podcast ·

2024/10/22

Tuesday, October 22, 2024 First Principles Genetic disease means that gene broken since conception. Novel medicines are possible ways to fix the gene - Genetic Therapies (ASO &/or AAV), this is recent, before now, kids with these diseases were a “go home and love them” situation. These are delivered via spinal tap or directly to the brain in leading medical centers. First though, regulators must approve. Our job Develop medicines or get industry to - This is happening see

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00:28:31

Nancy Leib Kessler is exceptional: Fundraising,...

CURE SYNGAP1 Podcast ·

2024/10/18

📝Full show notes: https://curesyngap1.org/podcasts/syngap10/ Census is at 1,497! Syngap.Fund/Census Fundraising Season! Gala is tonight in NJ! Syngap.Fund/CLG4 #NLKrox - UFD Tech, $52,094 - Scramble, $28,000 Current Efforts: - Coast2Coast Challenge $42,691 Syngap.Fund/C2C - Missense Account of the Fund $23,684 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund - Charmander

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00:22:50

UFDTech, Eye-tracking, Praxis #DEEpDive, Stoke,...

CURE SYNGAP1 Podcast ·

2024/09/24

📝Full show notes: https://curesyngap1.org/podcasts/syngap10/FRAZIER STUDY https://Syngap.Fund/Eye2 khuba@jcu.edu Praxis DEEp Dive https://x.com/JMGraglia/status/1838548992285896914 SRF Deck https://docs.google.com/presentation/d/1ePB5Ou6bGZ2NWWHIEwkO2dGSRYifyZEJy4KZF2fanq4/edit?usp=sharing We Need A Cure Yesterday blog https://curesyngap1.org/blog/we-need-a-cure-for-syngap1-yesterday/ Chronic Grief Al Freedman https://www.linkedin.com/posts/graglia_activity-7240740334329102336-hidL/

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00:17:27

Join Frazier Study, Combined Federal Campaign...

CURE SYNGAP1 Podcast ·

2024/09/10

📝Full show notes: https://syngap.fund/n149 FRAZIER STUDY https://Syngap.Fund/Eye2 khuba@jcu.edu SRD JOINS CFC #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/ PRESS ABOUT FOF (Friends of the Fund) Praxis https://firstwordpharma.com/story/5891543 Unravel https://curesyngap1.org/blog/unravel-biosciences-and-syngap-research-fund-clinical-research-to-accelerate-new-and-repurposed-therapies-for-syngap1-related-disorders-pr27/ RESEARCH UPDATE There are 295 papers on or

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00:23:18

Back2School, Unravel Bio, Support Gala & Scramble,...

CURE SYNGAP1 Podcast ·

2024/08/22

📝Full show notes: https://syngap.fund/n148BACK TO SCHOOL 2024 Push the schools to do better, at every turn. Different than 2023: https://curesyngap1.org/podcasts/syngap1-stories/syngap1-stories-episode-016-mike-graglia STUDY https://Syngap.Fund/UB (Unravel Biosciences)3 forms to fill out, please let us know if you want to participate. PRESIDENT & COO SEARCH https://curesyngap1.org/blog/srf-is-hiring-position-of-president-chief-operating-officer-coo/ RESEARCH UPDATE There are 293 papers on

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00:20:39

#SRFadvocates, #ColinFarrellFoundation, Adult...

CURE SYNGAP1 Podcast ·

2024/08/12

📝Full show notes: https://syngap.fund/n147 FDA Talk this week! Thank you Beacon! https://syngap.fund/fda24 SRF ADVOCACY - Don’t miss the chance to beef up your advocate muscles, after we get through FDA, the fun has just begun. JK & JJ are amazing. https://curesyngap1.org/team/leadership-team/jackie-kancir/ ADULT ADVOCACY SRF & UBC: https://curesyngap1.org/adults-with-syngap1-caregiver-resources/ also /Adult Interview: https://www.youtube.com/watch?v=JDiD8Z3lWQkFoundation:

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00:27:15

Title: Zempleni, #SYNGAPconf, #ProjectACE, #ACENHS,...

CURE SYNGAP1 Podcast ·

2024/07/27

📝Full show notes: https://syngap.fund/n146Off to Adam’s Camp: https://www.youtube.com/watch?v=WBBEZPLRaBQ #S10e110 Newsletter #39 - syngap.fund/NL39 https://mailchi.mp/curesyngap1.org/thefutureisnow-17390566 Cafe Syngap16 https://curesyngap1.org/podcasts/cafe-syngap1/norma-herrara/ Zempleni

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00:21:51

A tale of three grants… Coba Grant, Quadrato Grant &...

CURE SYNGAP1 Podcast ·

2024/07/12

📝Full show notes: https://syngap.fund/n1452020 COBA GRANT https://keck.usc.edu/news/ksom-researcher-awarded-130000-from-syngap-research-fund-to-study-rare-genetic-disease/ SYNGAP.FUND/IPSC - https://curesyngap1.org/ips-cell-models/ 2022 QUADRATO GRANT & 2022/3 PAPER MAY 22 PRE-PRINT: https://www.biorxiv.org/content/10.1101/2022.05.10.491244v1.full SRF PR: https://www.eurekalert.org/news-releases/1050685 2022 ANDERSON GRANT & 2024 PAPER Webinar:

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00:22:52

1,454! Including Hope. Keto, Heat, Sleep Study,...

CURE SYNGAP1 Podcast ·

2024/07/03

📝Full show notes: https://syngap.fund/n144 CENSUS = 1,454 https://curesyngap1.org/how-many-people-have-syngap1-census/ STX version! https://www.stxbp1disorders.org/news/stxbp1-census-q1-2024 FUNDRAISING Missense Account of the Fund https://www.linkedin.com/posts/curesyngap1_syngap1-srd-autism-activity-7213973153071472640-uSYEExplainer - https://www.youtube.com/watch?v=C9bGOA2MFHc Pipeline -

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00:19:58

Why is SYNGAP1 so under diagnosed? A reminder....

CURE SYNGAP1 Podcast ·

2024/06/20

📝Full show notes: https://syngap.fund/n143 BIO WAS GREAThttps://www.linkedin.com/posts/nashafitter_bio2024-activity-7204906035000582145-Meyp GRANTS APPROVED Multiple grants and agreements approved, wait for press releases. Thank you Aaron & Sarah, Lauren!FUNDRAISING - Great work to MDBR - Almost $45k, that will be added to $30k! https://charity.pledgeit.org/t/jY577u7uMc Awesome Peter, Heather, Aaron, Justin Albrect & Kali Worth. Also Dr Jillian McKee! - Blane & Ashley Dallen in

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00:15:00

NHS in Colorado! Real talk about new therapies....

CURE SYNGAP1 Podcast ·

2024/05/31

📝Full show notes: https://syngap.fund/n142 📺Full video here: https://youtu.be/5KLkpzBBBSQ BIG NHS UPDATE 66 Kids evaluated, 11 have had follow-ups, ~20 new kids scheduled. Colorado should start seeing patients in August! WHERE TO DONATE MONEY: MDBR is next week, donate now! https://charity.pledgeit.org/t/jY577u7uMc Thanks to the team. https://Syngap.Fund/Unite BLOOD: June 7 & 8, Loews Coronado Bay Resort, email CSO@cureSYNGAP1.org TIME TO JOIN #TEAMSRF - Volunteer Webinar:

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00:23:42

SRF LT Webinar, MDBR, Therapies, Learning at...

CURE SYNGAP1 Podcast ·

2024/05/20

JOIN SRF LT on Thursday:Volunteer Info session with Leadership Team is this week: https://syngap.fund/LT Thursday 5/23 at 5:30 Pacific. MDBR is 3 weeks away! https://Syngap.Fund/Unite $5k match https://x.com/phalliburton/status/1792288377049415835 It’s all about therapies. Precision Genetic and Repurposed. Conferences are where we engage professional communities around SYNGAP1 & SRF. - Last week I was at Milken Global. All diseases are talking about biomarkers & endpoints

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00:19:44

Who will fight for our kids when we aren’t there? SRF...

CURE SYNGAP1 Podcast ·

2024/05/02

Read Jackie’s article on profound autism, be grateful she is an SRF Leader.https://helenjournal.org/april-2024/achieving-equity Watch Brett’s 2 min talk on his son, he’s on your team too. https://x.com/UFDTech/status/1785111914168594894 Look at all these families that raise a quarter million dollars via #Sprint4Syngap 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ - $243k, 844 donors - Kaia’s event was wonderful https://curesyngap1.org/syngap-warriors/kaia/ - Reef’s family also

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00:17:57

SRF is a “Get-to…” not a “Have-to..” Do something &...

CURE SYNGAP1 Podcast ·

2024/04/23

Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE) SRF is the same: - Raise Funds to Change the Future - Volunteer, contribute to a larger effort - Connect with other families - Share our experience to make broader knowledge - Learn from each other and scientists Raise Funds #Sprint4SYNGAP 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ - Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd - $197k, 521 donors - See you Saturday, enjoy it.

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