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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

00:09:44

ADULT 🇵🇹 🇫🇷 🇪🇸 🇳🇱 🇬🇧 🇨🇦 caregivers PLEASE complete...

CURE SYNGAP1 Podcast ·

2025/05/01

Email: Ilakkiah.Chandran@uhn.ca about this study!Languages: English, Spanish, Portuguese and Dutch across the sites in Canada and Netherlands.All our kids will turn into adults and if you think people don’t understand our kids, wait till they turn into adults! It’s worse. There are less doctors who think in terms of genetic etiology (cause), which makes the literature so much more important. BTW, soon we will have treated and untreated! Dr. Andrade and her team are the best in the world.

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00:15:25

#S10e170 - Sprint is tomorrow! WODC Update. ASOs...

CURE SYNGAP1 Podcast ·

2025/04/26

Friday, April 25, 2025 - DNA DayGood luck at Sprint tomorrow. $194k at this moment.WODC ReadoutSaw friends (Hebbian Bio, Unravel, Ana M, Balaji) and families (HM AN E)RH Drug talk - https://youtu.be/Hpj72nMFfZc?si=dLVdeRNhVLfjCSar. (Other Family Day Presentations from SYNGAP1 Conference in LA are on YouTube https://www.youtube.com/playlist?list=PLjpr3a14_ls2ummdbWyUdvRpMcQBlRXy2)Read out in a panel where we had to really talk through small molecule (broad - LB) vs precision (narrow C4/STK) and

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00:15:38

ProMMiS Data Webinar up! New Board Sprint4SynGAP @...

CURE SYNGAP1 Podcast ·

2025/04/15

Tuesday, April 15, 2025 – Week 16CURRENT NEWS#Sprint4Syngap 2025 is in eleven days! Start or join a team and fundraise!https://curesyngap1.org/sprint25 look at these faces, $167,979 of which $145k+ fromTavillas! Board Announcement: https://www.eurekalert.org/news-releases/1080490LEARNING ABOUT SYNGAP1ProMMiS NHS Webinar from Dr. McKee: https://youtu.be/zozwf1NDB5I we were waiting for this great paper: https://www.sciencedirect.com/science/article/abs/pii/S1098360025000668 which I discussed in

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00:21:53

Time to Lean In FEROCIOUSLY on Clinical Trial...

CURE SYNGAP1 Podcast ·

2025/04/10

Wednesday, April 9, 2025 – Week 15Condolences to the Brimsek family and thank you John & Tobi for all your support. We just shared an interview with our board member and John’s son-in-law, Eric Moulton https://cureSYNGAP1.org/Stories Trip Report, two crazy days. Many takeaways. Trials may be coming soon. If there is a trail, sign up. Every time. khuba@jcu.edu Do the Frazier Study and do the follow-ups! https://curesyngap1.org/eye2 Global as well. Australia, UK, Canada, please help.We are

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00:15:17

Global CTR Survey, Two New PRs, Sprint4Syngap Hype &...

CURE SYNGAP1 Podcast ·

2025/03/26

Wednesday, March 26, 2025 – Week 13#S10e166 was remarkable, #UnMetNeed https://www.youtube.com/watch?v=rut1q0LzdtA, with almost 600 views this is the best S10 episode, ever. Don’t miss it, or the comments. Feel free to add to them!One of the things we did was make a CTR Survey, we have 130+ respondents, half US, half ROW - Poland and Australia. Not too late to take part: https://forms.gle/tx5CUWXiQMDcJhHA8Since CHCO PR in #S10e164, we have had two more: Dallman & SohalPR36 for GI meds:

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00:25:08

SYNGAP1 #UnMetNeed bucketed by Medical, Behavior/ID &...

CURE SYNGAP1 Podcast ·

2025/03/18

Tuesday, March 18, 2025 - Week 12SYNGAP1 & Unmet NeedPreface Let’s separate the notion of symptoms and disease description with lived caregiver and patient experience. When you do this, charts about seizure progression and symptom list lose their sterile veneer and become horror stories. This is critical because clinicians have become desensitized to patients' complaints and SYNGAP1 caregivers are tired of trying to explain to people how this disease hits you.SRD is slow moving, but suddenly

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00:10:10

Save Medicaid: A Critical Moment for Our Loved Ones -...

CURE SYNGAP1 Podcast ·

2025/03/12

Tuesday, March 11, 2025 - Week 11Special guest host, Monica Meyer, SYNGAP1 mom to Michael, advocate & educatorPlease give my video a watch and SAVE MEDICAID!Do it as if your child's life depends on it. I want to emphasize the importance of the current moment regarding Medicaid, not to alarm you, but to underscore the urgency of the situation. This is a critical time for the well-being of our loved ones, and the need to act has never been more pressing. For over 30 years, I’ve been advocating at

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00:17:37

Tell me your UnMet Need. CHCO ProMMiS! Gut Paper with...

CURE SYNGAP1 Podcast ·

2025/03/12

Tuesday, March 11, 2025 - Week 11CHCO Press Releasehttps://www.linkedin.com/posts/curesyngap1_syngap1-prommis-research-activity-7305258171642654723-5h2e fill spots, email info@curesyngap1 dot orgSYNGAP1 ProMMiS #SynGAProMMiShttps://curesyngap1.org/resources/studies/syngap1-prommis/Need your Voice on Unmet NeedPlease contact me with stories and permission to share. Mike@ PubMed is at 11

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00:26:09

RDD25 - Federal Funding - Hope vs Despair? Disability...

CURE SYNGAP1 Podcast ·

2025/03/01

RDD25 - Federal Funding - Hope vs Despair? Disability is Political. Take it or Advocate? #S10e163Friday, February 28, 2025 - Week 9Hope vs. Despair?Despair: NIH Cuts NBC https://www.nbcnews.com/science/science-news/trumps-nih-budget-cuts-threaten-research-stirring-panic-rcna191744NYT https://www.nytimes.com/2025/02/25/briefing/president-trump-vs-medical-research.html?unlocked_article_code=1.0U4.-7WW.F3yrk2tjpLJe&smid=url-share FDA Staffing

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00:18:18

We are on the Hill Advocating for a better future –...

CURE SYNGAP1 Podcast ·

2025/02/25

Tuesday, February 25, 2025 - Week 9ADVOCACY - Thank you Jessica, Jaime and Vicky for repping SRF at ELF RD Weekhttps://www.linkedin.com/posts/curesyngap1_raredc2025-syngap1-advocacy-activity-7300237949831368705-FIRS SPRINT4SYNGAP - April 26, 2025Webinar: cureSYNGAP1.org/S4S25Guide: cureSYNGAP1.org/S4SGuideLEVERAGE ON OUR GRANTS#Finland #Missense:

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00:16:04

Impact Report is out! Read the Stanford Knowles...

CURE SYNGAP1 Podcast ·

2025/02/12

Impact Report is out! Read the Stanford Knowles article. Sign up for Dreem.- #S10e161Tuesday, February 11, 2025 - Week 7IMPACT REPORT IS OUT!Impact Page:https://curesyngap1.org/syngap-research-fund-impact-on-the-road-to-cure-syngap1/ Press Release:https://curesyngap1.org/blog/syngap-research-fund-dba-cure-syngap1-srf-announces-the-release-of-their-syngap1-impact-report-for-2024-pr34/STUDIES OF THE WEEK -BEACON

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00:14:16

Don’t give up on your SYNGAPian at any age, Go Aaron!...

CURE SYNGAP1 Podcast ·

2025/02/04

Tuesday, February 4, 2025 - Week 6CONVO - Parent of 18 year old Travel now. Get meds under control fast Don’t do this alone Don’t give up on the adults Find doctors who want to learn and think, not dictate. STUDIES OF THE WEEK - FRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ Don’t underestimate this tool, please take part in this study. Tracker page:

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00:14:18

Study Spotlight: Rochester 3 Needs Toddlers,...

CURE SYNGAP1 Podcast ·

2025/01/28

Tuesday, January 28, 2025 - Week 5STUDIES OF THE WEEK - ROCHESTER 3 We need 3 more 0-2 Year olds. https://curesyngap1.org/resources/studies/neurodevelopmental-disorders-health-index-study-rochester-phase-3/ NYU - CureSYNGAP1.org/NYU https://curesyngap1.org/resources/studies/accuracy-of-smart-phone-identification-of-seizures-and-non-seizure-events-in-rare-genetic-epilepsies-nyu-langone-health/ Tracker page:

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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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