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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

00:14:07

New book by #SYNGAP1 mom for and about #GlassChild...

CURE SYNGAP1 Podcast ·

2025/12/01

#CyberMonday, December 1, 2025. Week 49.Go buy The Monster Inside My Brother by Nicole Ciccone illustrated by Lena Bardy.Bookshop: https://bookshop.org/p/books/the-monster-inside-my-brother-nicole-ciccone/8986b9c64d1ebe5d?ean=9798999980700&next=t&Barnes and Noble: https://www.barnesandnoble.com/w/the-monster-inside-my-brother-nicole-m-ciccone/1148368158 Amazon: https://a.co/d/imfxmwGSee you Thursday at the CURE SYNGAP1 Conference 2025 Atlanta:

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00:09:57

AAV. Resources on cureSYNGAP1.org. Congrats to...

CURE SYNGAP1 Podcast ·

2025/11/27

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.Continued from #S10e189…And the AAV Paper (https://pubmed.ncbi.nlm.nih.gov/40988338/) from #S10e187… https://curesyngap1.org/podcasts/syngap10/clinical-research-ai-dx-nl47-survey-autism-press-6-days-to-register-for-syngap1conf-s10e187/https://curesyngap1.org/blog/Issac’s story, Transmitter reprint, Scramble 4 write up and JK on #Autism, #MustReadhttps://curesyngap1.org/resources/webinars/ 119 - 112Register for livestream of the conference, AAV

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00:09:55

#CureSYNGAP1 Conf: 1 week! #GivingTuesday: 5 days....

CURE SYNGAP1 Podcast ·

2025/11/27

Happy Thanksgiving… Thursday, November 27, 2025. Week 48.https://curesyngap1.org/clinical-trials/ Emerald from Praxis for Relutrigine and DeeP Ocean from Longboard for Bexicaserin. Check them out, screen for both. See what you can do!Hectic with #MIHealthSummit, Tony at home, an NHS visit, Ultrabootcamp, not to mention prepping for the most elaborate conference yet!MI https://www.linkedin.com/posts/raymond-puerini_medtech-patientengagement-mihealthsummit-activity-7392679496266436608-7kWoBootcamp

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00:09:56

It’s time to UNLOCK THEIR TOMORROW - let’s raise...

CURE SYNGAP1 Podcast ·

2025/11/09

Sunday, November 9, 2025. Week 46.End of year campaign: UNLOCK THEIR TOMORROW, curesyngap1.org/unlock Why now? UNLOCK It’s giving season. Count our blessings and share what we have. CS1 has moved mountains this year: Staff, ProMMiS, etc. But we are just starting…Every single family should give and should solicit their friends. Yes, it’s a tough time. Yes, people have other causes. No (most of) your friends don’t have a SynGAPian.Miss 100% of the shots you don’t take. And remember, donors

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00:09:54

Clinical Research, AI Dx, #NL47, Survey, #Autism...

CURE SYNGAP1 Podcast ·

2025/10/25

Saturday, October 25, 2025. Week 43.Time to advocate, ELF on the Hill, support available, apply now: https://www.linkedin.com/posts/everylifeorg_were-excited-to-join-everyone-on-capitol-activity-7384625926333943808-mO1U/PUBMED at 47, and low. Clinical research!https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date- CHOP EEG ProMMiS

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00:09:54

#SyngapCenus 1,675 Teacher Handout CC/VNS Citizen...

CURE SYNGAP1 Podcast ·

2025/10/03

Friday, October 3, 2025. Week 40.#SyngapCenus 1,675 https://curesyngap1.org/blog/syngap1-census-2025-update-39-q3-2025-total-1675/Rachel J. made an educator handout https://curesyngap1.org/blog/supporting-students-with-syngap1-related-disorders/Sign up for Citizen Healthhttps://www.citizen.health/partners/srfCC/VNS Research w/ Citizen https://www.linkedin.com/posts/citizen-health-inc_syngap1-dee-raredisease-activity-7378823288950575105-YjP3 Rhymes with recent publication from Dr. Perry on

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00:09:24

F78.A1,the code for #SYNGAP1, turns 4, make sure we...

CURE SYNGAP1 Podcast ·

2025/09/30

Wednesday, October 1st, 2025. Week 40.SYNGAP1 Related Disorders secured an ICD-10 code exactly four years ago today, through the advocacy of SRF and the hard work of volunteers like Hans Schlecht. Our code is F78.A1Blog: https://curesyngap1.org/blog/syngap1-assigned-its-own-icd-10-code-f78-a1-srf/Check out #S10e8 to learn more: https://www.youtube.com/watch?v=tZ5s5rQawXgRead the case study: https://everylifefoundation.org/icd-code-roadmap/#toggle-id-13Hear from other leaders:

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00:09:51

DSC - RDCRN - NCATS - NIH Press! #AAV in #Cell. SRF...

CURE SYNGAP1 Podcast ·

2025/09/26

Friday, September 26, 2025. Week 39.In this episode of Syngap10, we continue the conversation from Episode 183, sharing the latest milestones and moments with our SYNGAP1 community.DSC has announced!DSC (part of RDCRN, part of NCATS, part of NIH) also announced and continues to raise profile of SYNGAP1 Related Disorders (SRD)Key post https://www.linkedin.com/posts/curesyngap1_86-million-nih-grant-renews-support-for-activity-7373870761230589952-aV1M #RDCRN List with #DSC

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00:09:51

You need a #CRID. SRF $1M to $CAMP noticed in Equity...

CURE SYNGAP1 Podcast ·

2025/09/26

Friday, September 26, 2025. Week 39.In #S10e182 I told you about CAMP4, don’t miss that, watch here: https://www.youtube.com/watch?v=PZ0Oj-Zz-B0 Sharing research comments from William Blair & WedbushWilliam Blair Initiation of Coverage: “Among several quality investors, the private placement included the Syngap Research Fund, which is active in the Syngap1 patient community and will be an important resource in aiding patient identification and enrollment in the Phase 1/2 trial in our

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00:09:57

CURE SYNGAP1 joins biotech investors in CAMP4 Tx’s...

CURE SYNGAP1 Podcast ·

2025/09/10

Wednesday, September 10, 2025. Week 37.CAMP4 Press Release: https://www.linkedin.com/posts/caleb-moore-4382704_syngap1-activity-7371545171047628800-zVqRLet me tell you a story:EW Story, concern over viability of C4.Easy to follow financials, Mrkt Cap and Net assets of ~$40M. Net income/EBITDA of -$12.6M in Q2. Running Phase I / II trials and ramping up for Phase III, not cheap. They need more than they had and capital is hard to get in this market.But here is the good part, the data is solid, the

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00:14:33

Why & How Do Patient Advocacy Groups Matter? Party...

CURE SYNGAP1 Podcast ·

2025/09/08

Sunday, September 7, 2025. Week 37.Why does CURE SYNGAP1 aka SRF matter? Do PAGS make a difference?Heck yes.1. Empower Families - Support. Educate. Activate. Coordinate.2. Use Money Catalytically - Tax advantage. Pool. Manage. Make Catalytic. Focus. Manage.3. Partner with Science & Medicine - Push forward. Connect efforts. Focus on Tx. Work in Clinic.4. Leverage Ecosystem. Industry. PAGs. Superpags (CB, GG, ELF).5. Ensure Continuity. Our kids will outlast us. Our energy wanes.

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00:09:59

#IEP: Syngapians don’t like the heat 🌡️ #BeaconOfHope...

CURE SYNGAP1 Podcast ·

2025/08/29

Friday, August 29th, 2025. Week 35.5th Annual Gala was a great success! cureSYNGAP1.org/Gala5Sad to miss it? Join us in Boston or South Carolina. Deadline for Boston is 9/3 for tickets.Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/ScrambleSRF is active in Lisbon at #IEC2025 thank you KD, JA, VA! Hi Dr. Knowles!We are at Booth #17

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00:19:50

GALA is now, #StokedAboutStoke, Go Grann, Our...

CURE SYNGAP1 Podcast ·

2025/08/23

GALA is now, #StokedAboutStoke, Go Grann, Our Villages, CHOP/NIH, More on Elopement. #S10e179Friday, August 22nd, 2025. Week 34.The 5th Annual Gala is happening now! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-galaforsyngap1-activity-7363593302312402944-W_TZcureSYNGAP1.org/Gala5Sad to miss it? Join us in Boston or South Carolina.Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/ScrambleStoke

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00:19:51

How to talk about #ELOPEMENT in #SYNGAP1 with...

CURE SYNGAP1 Podcast ·

2025/08/19

Tony (11, M) Story. Now we sleep with the alarm on every night.Elopement: involves leaving a safe or supervised area without permission.poses a risk to the individual's safety.can occur in various settings.is a common behavior in individuals with ASD.Virginie (10, M) Stories and Service Dog.Single Mom (9, M) heading to the judge and calls me asking for papers. Here you go…Let’s note that Elopement was masked behind broader buckets and I think this is a miss. We need to name and discuss this

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00:14:14

Embracing Complexity, Another Pipeline Neuren Pharma,...

CURE SYNGAP1 Podcast ·

2025/08/09

Friday, August 8th, 2025. Week 32.CURE SYNGAP1 aka SRF is getting more complex daily, and this is a good thing.Today: Event planning, DCM Advising, Patient Advocacy Connecting, Infrastructure building, Conference Preparation.DCM - Cunnane: https://pubmed.ncbi.nlm.nih.gov/40494056/ Blog on DCM: https://epilepsygenetics.blog/2025/06/20/revisiting-syngap1-through-a-disease-concept-model/ My comments at the 2024

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00:16:43

Why join the Relutrigine study from Praxis for DEEs...

CURE SYNGAP1 Podcast ·

2025/07/30

Wed July 30, 2025Audience: Any family with a DEE who has a kid who has seizures, yes SYNGAP1 is a DEE and you are always my first audience.See #S10e133 if you are curious about DEE vs other names. https://curesyngap1.org/podcasts/syngap10/what-is-this-syngap1-illness-disease-syndrome-ndd-dee-mrd5-nsid-actually-called-s10e133/Action: If your kid has motor seizures, fill out the screener and join this amazing study.Link here: https://www.resiliencestudies.com/emeraldA motor seizure is a seizure where

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00:17:01

Global Overview of SYNGAP1 Natural History Studies -...

CURE SYNGAP1 Podcast ·

2025/07/17

July 16, 2025. Week 29.What is a natural history study (NHS)? And why do we care?We care because we haven’t done this before, heal those born with disease.Natural history studies, which examine the progression of a disease over time, can be either retrospective or prospective. Retrospective studies analyze existing data, like medical records, while prospective studies collect new data over time. Both types are valuable for understanding a disease's course and informing research and treatment

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00:15:51

CENSUS, SYNGAP1. It is racing to a better future b/c...

CURE SYNGAP1 Podcast ·

2025/07/07

July 7, 2025 Week 28ADAMS CAMPhttps://curesyngap1.org/podcasts/syngap10/adams-camp-is-amazing-so-are-compression-vests-s10e110/ CENSUS & WHY WE WILL SEE MORE PATIENTSAAP recommends Whole Exome as a first line test for GDD/ID.https://www.linkedin.com/posts/ambry-genetics_exome-cns-patientforlife-activity-7343354049586466816-Jbq_SYNGAP1 Census 2Q25 +55; new total 1,636, but we need to look at country by country to appreciate how low that

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00:27:45

TOMORROW 6/21 IS SYNGAP1 AWARENESS DAY...

CURE SYNGAP1 Podcast ·

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 CONNECThttps://curesyngap1.org/curesyngap1connect/CAMP4 Update - Hear it from

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00:43:42

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

CURE SYNGAP1 Podcast ·

2025/05/19

Sunday May 18, 2025. Week 21Show notes on the site: https://curesyngap1.org/podcasts/syngap10/ CAMP4Press Release https://investors.camp4tx.com/news-releases/news-release-details/camp4-presents-translational-data-syngap1-related-disordersDr. Yuri at WODC: https://www.youtube.com/watch?v=oNwgo7TmrVoPresentation at ASGCT: https://investors.camp4tx.com/news-events/presentationsGETA Talk:

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191 results

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