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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

00:28:31

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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00:24:35

Grateful and grieving. SRF is growing with our...

CURE SYNGAP1 Podcast ·

2024/04/04

TOGETHER WE ARE STRONGER- 1,400 strong, thank you Jess & team. https://curesyngap1.org/blog/syngap1-census-2024-update-61-in-q1-2024-total-1400/ - Stoke webinar: one of the most important considerations for deciding which disease to work on was, “…how strong is the patient advocacy group?” - Stoke CMO Barry Ticho, MD, PhD, FACC during webinar 4/2/24 to discuss findings of STK-001 WELCOME AND CONNECT - New parents are coming fast, reach out to them, tell them how much hope to have. -

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00:25:23

Stoke, Praxis, Longboard; CHOP & Adult Studies;...

CURE SYNGAP1 Podcast ·

2024/03/26

Genetic Therapy Companies (ignoring small molecules, see our pipeline here https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/) Stoke Therapeutics #StokedAboutStoke Presser: https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-landmark-new-data-support-potential I did call this in #S10e111 https://youtu.be/i6EZUrqsn2g?si=RN3SLR2vHCjgAiGt&t=706 This study started in #S10e83

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00:17:41

SYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is...

CURE SYNGAP1 Podcast ·

2024/03/16

Do this study for UCB: https://Syngap.Fund/QOL24 Two killer publications: Boston - https://www.linkedin.com/posts/graglia_syngap-research-fund-announces-308000-multidisciplinary-activity-7173732255369035776-HC-9 Penn/ENDD - https://www.sciencedirect.com/science/article/abs/pii/S153854422400021X Email Info at CureSYNGAP1 dot org for PDFs! Visit to UCSF - Exciting new proposal and wait for the Wilsey paper! Background: https://www.youtube.com/watch?v=pagFzSmYK8E Repurposing is moving apace!

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00:19:26

#RareOnTheHill and #SRFboard in DC were epic. It’s...

CURE SYNGAP1 Podcast ·

2024/03/05

DC was epic, come next year!- Board Meeting and Leadership Team. - Rare on the Hill - Nancy, John, Vicky, Kathryn, Marta, Suzanne, Jess Johnson! https://www.facebook.com/suzanne.v.jones/posts/pfbid02pMjKxryjDej62FM2RRA6afyU5JPkdB37dXzVrXMLFzjsWmRTQV2wtR3BNaaFcTK4l - Last week of Feb, don’t miss it. #RareBrewCoffee has launched! https://rarebrewcoffee.com/ use code SRF10 Reflecting on the latest Rick Huganir paper - This was in part supported (as acknowledged) by our first grant, 5 years ago we

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00:35:11

A very important questionnaire. Repurposing update &...

CURE SYNGAP1 Podcast ·

2024/02/24

#S10e96 - https://www.youtube.com/watch?v=MkCKK4Z7J2IRochester - Check. I asked in #S10e132 to do this and you stepped up, thank you. We hit 200! Aparito time Fill this in: https://forms.gle/4EsW3wu8BG4TQrD7A The intersection of biomarkers and repurposing: The latter could help us figure out which of the former to focus on which could be the difference between a drug making it. Repurposing: Friend message - “And I wanted to tell you about the worsening behavior with treatments: a friend of

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00:13:16

What is this SYNGAP1 illness / disease / syndrome /...

CURE SYNGAP1 Podcast ·

2024/02/14

A. MRD5 - https://www.ncbi.nlm.nih.gov/medgen/382611 B. SYNGAP1 NSID - https://pubmed.ncbi.nlm.nih.gov/21237447/ (Hamdan, 2011) C. SYNGAP1 NDD - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6128754/ (Kilinc, 2011) D. Confusing https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.a.37189 (Parker, 2015) De Novo, Heterozygous, Loss-of-Function Mutations in SYNGAP1 Cause a Syndromic Form of Intellectual Disability E. SYNGAP1 DEE - https://pubmed.ncbi.nlm.nih.gov/30541864/ (Vlaskamp, 2019) F. SYNGAP1

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00:15:05

Congratulations to Encoded, Jaguar, Aparito and what...

CURE SYNGAP1 Podcast ·

2024/02/07

TWO Gene therapy INDs approved in the past week! JAG201 for SHANK3 https://pmsf.org/breaking-news-from-jaguar-gene-therapy/ ETX101 for SCN1A https://encoded.com/press-releases/encoded-therapeutics-announces-us-ind-clearance-and-australian-cta-approval-for-dravet-syndrome-gene-therapy-candidate-etx101/ Mike’s Gene Therapy Cheat Sheet https://docs.google.com/spreadsheets/d/1jwH5piRH9gOmylz-pCNd_DFnpEHJ6EkFyoaMjidBk6c/edit?usp=sharing TAKE THE ROCHESTER

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