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PODCAST

CURE SYNGAP1 PODCAST aka SYNGAP10

Syngap Research Fund, 501(c)(3)

Over 1,600 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 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 CURE SYNGAP1. CURE SYNGAP1 is a parent-led 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

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All Episodes

27:45

TOMORROW 6/21 IS SYNGAP1 AWARENESS DAY...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/06/20

It’s been a month, in that time we’ve had a few important webinars, published lots of wonderful content & attended BIO in Boston this week. Thank you Virginie for going to BIOhttps://www.linkedin.com/posts/virginie-mcnamar_bio2025-theworldcantwait-raredisease-activity-7341849619028430848-I_FD Ambry was awesome https://www.linkedin.com/posts/graglia_syngap1-ambryknowsgenes-activity-7336183874890231809-Beua CURE SYNGAP1 CONNECT https://curesyngap1.org/curesyngap1connect/ CAMP4 Update -

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43:42

CAMP4, JAX and Allen present about ASCGT, JHU...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/05/19

Sunday May 18, 2025. Week 21Show notes on the site: https://curesyngap1.org/podcasts/syngap10/ CAMP4 Press Release https://investors.camp4tx.com/news-releases/news-release-details/camp4-presents-translational-data-syngap1-related-disorders Dr. Yuri at WODC: https://www.youtube.com/watch?v=oNwgo7TmrVo Presentation at ASGCT: https://investors.camp4tx.com/news-events/presentations GETA Talk:

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09:44

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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

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15:25

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/04/26

Friday, April 25, 2025 - DNA DayGood luck at Sprint tomorrow. $194k at this moment. WODC Readout Saw 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

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15:38

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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/1080490 LEARNING ABOUT SYNGAP1 ProMMiS 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

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21:53

Time to Lean In FEROCIOUSLY on Clinical Trial...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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

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15:18

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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/tx5CUWXiQMDcJhHA8 Since CHCO PR in #S10e164, we have had two more: Dallman & Sohal PR36 for GI

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25:08

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/03/18

Tuesday, March 18, 2025 - Week 12SYNGAP1 & Unmet Need Preface 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

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10:10

Save Medicaid: A Critical Moment for Our Loved Ones

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/03/12

Please 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 the state legislature level and with congressional members, but the potential cuts to Medicaid we are

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17:37

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/03/12

Tuesday, March 11, 2025 - Week 11 CHCO Press Release https://www.linkedin.com/posts/curesyngap1_syngap1-prommis-research-activity-7305258171642654723-5h2e fill spots, email info@curesyngap1 dot org SYNGAP1 ProMMiS #SynGAProMMiS https://curesyngap1.org/resources/studies/syngap1-prommis/ Need your Voice on Unmet Need Please contact me with stories and permission to share. Mike@ PubMed is at 11

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26:09

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/03/01

Friday, 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-rcna191744 NYT 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 Cuts https://www.biopharmadive.com/news/fda-layoffs-trump-doge-hhs-cuts-impact/740499/ Medicaid Cuts

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18:18

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/02/25

We are on the Hill Advocating for a better future – Sprint, DREEM, Travel & NET - #S10e162 Tuesday, February 25, 2025 - Week 9 ADVOCACY - Thank you Jessica, Jaime and Vicky for repping SRF at ELF RD Week https://www.linkedin.com/posts/curesyngap1_raredc2025-syngap1-advocacy-activity-7300237949831368705-FIRS SPRINT4SYNGAP - April 26, 2025 Webinar: cureSYNGAP1.org/S4S25 Guide: cureSYNGAP1.org/S4SGuide LEVERAGE ON OUR GRANTS #Finland #Missense:

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16:04

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/02/12

Tuesday, 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 DREEM https://curesyngap1.org/resources/webinars/98-dreem-eeg-headband-to-assess-sleep-eeg-biomarkers-in-syngap1/ COLORADO CHILDREN'S HOSPITAL - April &

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14:16

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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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14:18

Study Spotlight: Rochester 3 Needs Toddlers,...

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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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11:50

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/01/15

RESEARCH UPDATEThere 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

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12:08

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2025/01/10

Friday, January 10, 2025NEWS 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 moving faster. Our job now is to convince donors that we need more fuel

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21:56

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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

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17:17

Annie - #S10e155

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

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

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14:39

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

CURE SYNGAP1 PODCAST aka SYNGAP10 ·

2024/11/16

Friday, November 15, 2024SRF 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 our

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