Episodes

  • Tony update. #ThisIsOursToLose. More great results from $CAMP4. #NightOfImpact in 9 days! #S10e208

    Tony update. #ThisIsOursToLose. More great results from $CAMP4. #NightOfImpact in 9 days! #S10e208
    May 19 2026

    Tuesday, May 19, 2026 - Week 21

    Personal Update via Syngap Stories:

    Page: cureSYNGAP1.org/stories41

    Post: https://www.linkedin.com/posts/syngap1stories-syngap1-curesyngap1-share-7462125026276777984-OVBr

    #ThisIsOursToLose - Three steps to engaging friends with CURE SYNGAP1.

    1. Share CURE SYNGAP1 Video - Burden, Hope & Progress - 1.1k views in 11 days.

    cureSYNGAP1.org/Burden https://www.linkedin.com/posts/syngap1-curesyngap1-raredisease-share-7458298251893448706-jfWF

    1. Send IMPACT REPORT - Tool for family, newly diagnosed & Fundraising.

    cureSYNGAP1.org/Impact or cureSYNGAP1.org/Impact25

    1. Ask to Donate

    curesyngap1.org/donate/

    CAMP4

    Joining us at the Night of Impact (with Stoke, Acadia, BioMarin, Gondola & others) and…

    https://www.biospace.com/press-releases/camp4-therapeutics-to-present-new-preclinical-data-demonstrating-cmp-002-improves-seizure-threshold-and-severity-in-a-model-of-syngap1-related-disorder

    INAUGURAL SF NIGHT OF IMPACT, CA – 9 days

    Join us this is our only Gala for 2026!

    cureSYNGAP1.org/SF26

    5TH SCRAMBLE FOR SYNGAP, SC – 137 days

    Classic case of a small event becoming an institution!

    cureSYNGAP1.org/Scramble26

    CURE SYNGAP1 CONFERENCE - 198 days.

    cureSYNGAP1.org/Pre26

    USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142

    PUBMED

    Pubmed 2026 is at 31. +10 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    SOCIAL MATTERS

    4,964 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1.58k YouTube. https://www.youtube.com/@CureSYNGAP1

    11.1k Twitter https://twitter.com/cureSYNGAP1

    45k Insta https://www.instagram.com/curesyngap1

    $CAMP closed at $4.56 yesterday.

    https://www.google.com/finance/beta/quote/CAMP:NASDAQ

    Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

    Episode 208 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
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    10 mins
  • Earnings reports: CAMP4 files. Stoke optimizing. Praxis on track. 2026 Video! #S10e207

    Earnings reports: CAMP4 files. Stoke optimizing. Praxis on track. 2026 Video! #S10e207
    May 8 2026
    Friday, May 8, 2026 - Week 19 CURE SYNGAP1 STRATEGY WORKING Our strategy has always been to derisk SYNGAP1 so that industry will invest and bring their skill and capital to bear. We leverage donor dollars to maximize impact. Yesterday was a great example: EARNINGS REPORTS CAMP4 1Q26 Results: $99M https://investors.camp4tx.com/news-releases/news-release-details/camp4-reports-first-quarter-2026-financial-results-and-corporate We submitted our first regulatory filing for CMP-002 in Australia which positions us to initiate a global first-in-human Phase 1/2 clinical trial in the second half of 2026. Stoke 1Q26 Results: $411M https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-first-quarter-2026-financial Lead optimization is underway to identify a clinical candidate for the treatment of SYNGAP1 in 2026. SYNGAP1 is a severe and rare genetic neurodevelopmental disease. Praxis 1Q26 Results: $1.4B https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-19 Praxis remains on track to nominate a development candidate for each of its three early stage ASO therapeutic initiatives in the first half of 2026: PRAX-090 is designed to address SYNGAP1 loss-of-function (LoF) mutations, a leading cause of severe intellectual disability and epilepsy in DEEs. #CompetitionIsGoodForThePatient KCNT1 Big Day today - Congratulations Post: https://www.linkedin.com/posts/graglia_kcnt1-share-7458560855744618496-X10d Press Release: https://www.linkedin.com/posts/kcnt1-kcnt1-epilepsy-ugcPost-7458487179149787136-kH7c/ WATCH & SHARE OUR VIDEO Watch and share the new SYNGAP1 Video, it is excellent and helps explain our cause to families and friends. We need to turn them into supporters and donors. cureSYNGAP1.org/SYNGAP1 -> https://youtu.be/pO3ayASBiEk INAUGURAL SF NIGHT OF IMPACT, CA – 20 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26 5TH SCRAMBLE FOR SYNGAP, SC – 148 days Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142 PUBMED Pubmed 2026 is at 28. +9 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date https://pubmed.ncbi.nlm.nih.gov/42093631/ ADHD in patients with #DLG2 #NRXN1 #SHANK3 #SYNGAP1 SOCIAL MATTERS 4,940 LinkedIn. https://www.linkedin.com/company/curesyngap1 1,569 YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP closed at $4.46. https://www.google.com/finance/beta/quote/CAMP:NASDAQ $STOK closed at $32.89. https://www.google.com/finance/beta/quote/STOK:NASDAQ $ACAD closed at $22.40. https://www.google.com/finance/beta/quote/ACAD:NASDAQ $PRAX closed at $330.02. https://www.google.com/finance/beta/quote/PRAX:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 207 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
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    10 mins
  • Longitudinal Data Matters! Prioritized list of studies! #Sprint4SynGAP a great success! #S10e206

    Longitudinal Data Matters! Prioritized list of studies! #Sprint4SynGAP a great success! #S10e206
    May 6 2026
    Wednesday, May 6, 2026 - Week 19 Congrats to GETA, CURE SYNGAP1 Australia & CAMP4 for a great weekend. https://www.linkedin.com/posts/syngap1-epilepsy-ugcPost-7457791427486466048-j8SB WEBINARS! CURE-ID Webinar tomorrow! Register now. Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID Next week, especially NY families, while you are registering, please make sure to go to this one with Dr. Buxbaum from Mt. Sinai. curesyngap1.org/seaver https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-rarediseaseresearch-activity-7457507565527044096-dDEK Longitudinal Data Matters - Every six months or more! Study list! CURE SYNGAP1 CONNECT http://curesyngap1.org/connect Citizen Health https://www.citizen.health/ai-advocate/syngap1 Combined Brain ProMMiS https://www.linkedin.com/feed/update/urn:li:activity:7450196488300728320 & Rare-X, the same week. OR DSC. #S10e CURE-ID for Drug responses. Webinar: Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID 6th ANNUAL SPRINT FOR SYNGAP1, we raised over $300k! (Gross) Thank you Tavillas for raising over $170k this will go to the Missense fund. We spent over $¼M on missense last year. Thank you Emily Barnes for hosting a New England event for families. https://www.linkedin.com/posts/ecarlisle_we-had-an-incredible-sprint-for-syngap-ugcPost-7457845816502845440-nJCd Thank you to Sara and Sarah for the Virginia event. GREAT WORK. https://www.linkedin.com/posts/sarah-sakly-648544337_syngap1-raredisease-curesyngap1-ugcPost-7456869206341464065-VESz Thank your Rifton for the donation of the tricycle. Congratulations Matthew! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-sprint4syngap-activity-7457806850676281344--JR- Thank you to the Edouard Family! cureSYNGAP1.org/Crafts26 https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-craftsforacure-activity-7457211260242411520-ekPz INAUGURAL SF NIGHT OF IMPACT, CA – 22 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26 5TH SCRAMBLE FOR SYNGAP, SC – 150 days Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142 PUBMED Pubmed 2026 is at 27. +10 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date SOCIAL MATTERS 4,931 LinkedIn. https://www.linkedin.com/company/curesyngap1 1.56k YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP closed at $3.97 Friday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 206 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • Comment on Haystack Petition to FDA. New Board of Trustees. #ICD10 F78.A1 #CureID #S10e205

    Comment on Haystack Petition to FDA. New Board of Trustees. #ICD10 F78.A1 #CureID #S10e205
    Apr 21 2026
    Monday, April 20, 2026 - Week 17 CURE SYNGAP1 joins the Haystack Project in petitioning FDA for more clarity. PR: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7dbb80155f46e144ae2e5/1775754168227/4.9.26+press+release+petition_vf.pdf Petition: https://static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7e016d5986e16ff09b64c/1775755288463/Letter+Head+Petition+for+rulemaking+to+amend%C2%A021+CFR+%C2%A7+314.126+and+%C2%A0%C2%A7312.47+%281%29.pdf Reuters 4/1: https://www.reuters.com/sustainability/boards-policy-regulation/rare-disease-advocacy-group-urges-trump-administration-restore-fda-clarity-2026-04-01/ Pink Sheet: https://insights.citeline.com/pink-sheet/pathways-and-standards/review-pathways/could-structured-not-ad-hoc-us-fda-flexibility-increase-rare-disease-development-certainty-BYXJENIJLFEINOSO72RS53ZJHE/ Show your support here: https://www.regulations.gov/document/FDA-2026-P-3666-0001 Paragraph 1 – Share information about you and SYNGAP1. Paragraph 2 – Seizures are hard to count while X, Y and Z are major burdens but FDA wants nice countable seizures, this makes it hard to develop drugs. Paragraph 3 – How could “clinically meaningful” endpoints potentially help your community and drug developers? How could a study design other than a ‘randomized clinical trial’ help? How could FDA consulting with disease-specific experts help? Closing – Finish your letter with anything along these lines: We support the framework for all rare set diseases in Haystack’s petition. We don’t believe FDA has to lower the evidentiary bar to approve treatments for our diseases. Randomization isn’t always possible. New scientific methods should be considered. Endpoints specific to our disease should be considered. We urge FDA to open a rulemaking so we can have a legally binding regulation. Board changes, thank you to everyone. https://www.linkedin.com/posts/curesyngap1_curesyngap1-syngap1-patientadvocacy-activity-7450528611339616256-4MJF?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAAD8f4B7JC4TMss45Q8hrsq5kiceI0Z8HE Press Release cureSYNGAP1.org/PR45 US, use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142 Study list! Citizen Health https://www.citizen.health/ai-advocate/syngap1 Combined Brain (May 1 & 2 in NorCal), https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit?usp=sharing ProMMiS https://www.linkedin.com/feed/update/urn:li:activity:7450196488300728320 Rare-X, the same week. DSC and Cook’s are coming soon! CURE-ID for Drug responses. CURE-ID is cool. https://cure.ncats.io/home (Webinar coming) Webinar: Thu May 7, 2026 1:30pm – 3pm (PDT) cureSYNGAP1.org/cureID 6th ANNUAL SPRINT FOR SYNGAP1, EVERYWHERE – 5 days - $207k! Go Tavilla. 17 teams raised $265K last year; this year, we have 20+ teams! https://curesyngap1.org/calendar/sprint4syngap-2026 Thank your Rifton for the donation of the tricycle. Email today: https://mailchi.mp/curesyngap1.org/sprint-for-syngap-2026-one-community-one-goal?e=17610baa03 INAUGURAL SF NIGHT OF IMPACT, CA – 38 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26 5TH SCRAMBLE FOR SYNGAP, SC – 166 days Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 PUBMED Pubmed 2026 is at 26. +9 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date SOCIAL MATTERS 4,891 LinkedIn. https://www.linkedin.com/company/curesyngap1 1.55k YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP closed at $4.67 Friday. https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 205 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204

    Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204
    Apr 14 2026

    Tuesday, April 14, 2026 - Week 16

    Census is 1,761

    https://curesyngap1.org/blog/syngap1-census-2026-update-54-q1-total-1761

    Trip to Texas for UT Arlington and Cook Children's

    • Systems innovation with Dr. Lal and Dr. Perry
    • My post: https://www.linkedin.com/posts/graglia_raredisease-activity-7448087944466259970-MADW?utm_source=share
    • *** Dr. Lal’s post: *** https://www.linkedin.com/posts/dennis-lal-71a8988a_epilepsies-neurodevelopmentaldisorders-raredisease-activity-7449111793991577600-sfXZ

    ProMMiS patients - 164 unique patients, 96 of whom have had 2 visits & 46 others 3-5 visits

    https://curesyngap1.org/resources/studies/syngap1-prommis

    Citizen - 289 registered

    https://www.citizen.health/ai-advocate/syngap1

    Victoria Arteaga representing CURE SYNGAP1 at IBE Global Leaders Meeting

    https://www.linkedin.com/posts/victoria-arteaga-26913433_syngap1-rareepilepsy-dee-activity-7449587651885621248-UD9v

    Newsletter 51 www.cureSYNGAP1.org/NL51

    SYNGAP1 Snippets

    You are in this for life.

    Board meetings to approve budgets, fundraising has never been more important.

    6th ANNUAL SPRINT FOR SYNGAP1, EVERYWHERE – 12 days - $169k! Go Tavilla.

    17 teams raised $265K last year; this year, we have 24 teams who have raised almost $170K so far.

    https://curesyngap1.org/calendar/sprint4syngap-2026

    INAUGURAL SF NIGHT OF IMPACT, CA – 46 days

    Join us this is our only Gala for 2026!

    cureSYNGAP1.org/SF26

    5TH SCRAMBLE FOR SYNGAP, SC – 174 days

    Classic case of a small event becoming an institution!

    cureSYNGAP1.org/Scramble26

    PUBMED

    Pubmed 2026 is at 24. +8 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    SOCIAL MATTERS

    4,869 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1.55k YouTube. https://www.youtube.com/@CureSYNGAP1

    11.1k Twitter https://twitter.com/cureSYNGAP1

    45k Insta https://www.instagram.com/curesyngap1

    $CAMP closed at $4.64 yesterday.

    https://www.google.com/finance/beta/quote/CAMP:NASDAQ

    Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

    Episode 204 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • DSC-III and Data - CURE SYNGAP1 is working tirelessly to increase SYNGAP1 Knowledge #S10e203

    DSC-III and Data - CURE SYNGAP1 is working tirelessly to increase SYNGAP1 Knowledge #S10e203
    Apr 4 2026

    Friday, April 3, 2026 - Week 14

    Just back from the DSC-III Kickoff Meeting! As announced back in September 2025. Really strong group of clinicians.

    https://dsc.rarediseasesnetwork.org/patient-advocacy-groups

    More on DSC in #S10e184 https://curesyngap1.org/podcasts/syngap10/dsc-rdcrn-ncats-nih-press-aav-in-cell-srf-at-cb-scramble-for-syngap1-s10e184/

    We will have sites at SYNGAP1 established doctors, Dr. Wiltrout at Boston Children's Hospital/Harvard, Dr. Holder at Baylor and our very own ProMMiS Doctors: Knowles at Stanford / Dr. Abbott at Colorado. AND, excitingly, these two new locations:

    Rush University Medical Center (Rush) led by Dr. Dr. Liz Berry-Kravis.

    University of Alabama at Birmingham led by Dr. Martina Bebin.

    Interestingly we are paired with PMS aka SHANK3 so the comparisons will naturally arise. Both post-synaptic, they are a half step ahead of us. (We will catch up!) SHANK3 and SYNGAP1 have lots in commons: PSD, Synaptic Plasticity, mTOR. Differences, we have more epilepsy, they have more Catatonia (see Table 2 in Trelles 2026 https://pubmed.ncbi.nlm.nih.gov/41895438/).

    After that I met with Dr. Xin Tang from BCH who is working on some exciting potential therapies and then over to CAMP4, who is moving at light speed.

    ILAE Rare Epilepsy Big Data Task Force for 4 years! Makes me think about data…

    Where does SYNGAP1 Data Live?

    • Citizen.Health Retrospective
    • ProMMiS Clinical
    • Rare-X PRO
    • Now the DSC will have both
    • Combined Brain Registry and EEG Database.
    • In Argentina SYNGAP1 Registry, potentially expanding to Chile and Colombia.
    • In the EU there is PATRE part of EURAS.
    • In the UK, it seems largely via NHS.
    • In China, I don’t know but this paper shows us someone has 99 people: https://pubmed.ncbi.nlm.nih.gov/41914539/
    • Where else?

    SYNGAP1 is having a moment, we need project manager volunteers.

    SPRINT FOR SYNGAP1, EVERYWHERE – 21 days - $132k!

    Get on the map!

    https://curesyngap1.org/calendar/sprint4syngap-2026

    INAUGURAL SF NIGHT OF IMPACT, CA – 55 days

    Join us this is our only Gala for 2026!

    cureSYNGAP1.org/SF26

    5TH SCRAMBLE FOR SYNGAP, SC – 183 days

    Classic case of a small event becoming an institution!

    cureSYNGAP1.org/Scramble26

    PUBMED

    Pubmed 2026 is at 22. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date

    SOCIAL MATTERS

    4,822 LinkedIn. https://www.linkedin.com/company/curesyngap1

    1.55k YouTube. https://www.youtube.com/@CureSYNGAP1

    11.1k Twitter https://twitter.com/cureSYNGAP1

    45k Insta https://www.instagram.com/curesyngap1

    $CAMP closed at $4.47 today.

    https://www.google.com/finance/beta/quote/CAMP:NASDAQ

    Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10

    Episode 203 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • It is time to get ready for clinical trials, this is how. #S10e202

    It is time to get ready for clinical trials, this is how. #S10e202
    Mar 26 2026
    Thursday, March 26, 2026 - Week 13 Thanks for NL50 Ed! cureSYNGAP1.org/NL50, I listened to Episode 1 and, as it turns out, it was March 12, 2021 (five 5️⃣ years ago), and it’s evergreen. SEVEN THINGS YOU NEED TO DO TO BE READY FOR CLINICAL TRIALS Stay Connected to CURE SYNGAP1. Fill in the Connect Form https://curesyngap1.org/connectHave an annual call with LaurenSubscribe to the CURE SYNGAP1 Podcast everywhere and to our YouTube Know your mutation, have your genetic report. Memorize it or get a tattoo.Sign up for our Natural History Studies. Looking forward: ProMMiS https://curesyngap1.org/prommis/ (Also helps you figure out travel)Looking back: Citizen Health https://www.citizen.health/ai-advocate/syngap1 Participate in Research, get your mutation affirmed and published. Join the CB BioRepository https://combinedbrain.org/roadshowGive samples early and often, like me last week: https://www.linkedin.com/posts/graglia_syngap1-syngap-ciliopathy-activity-7441907768468451328-xhzb Do Surveys Educate yourself, start with these two blogs. https://curesyngap1.org/blog/emerging-medicines-syngap1-related-disorders-primer-comparison-glossaryhttps://curesyngap1.org/blog/preparing-for-syngap1-clinical-trials-what-families-need-to-know Extra Credit: Collect your EEGs. Get them from everywhere you have been (check Citizen to be sure)Keep them handy on a google drive… like this: https://drive.google.com/drive/folders/1vUMRMtnvTJJi7WEwcSrDSLArGL3vzFxH?usp=share_link Upload them to the CB EEG Repository. Email Lauren for info#S10e123 https://curesyngap1.org/podcasts/syngap10/the-more-we-own-our-eegs-the-sooner-we-get-a-biomarker-simple-and-remember-to-get-dinner-tickets-for-the-conference-s10e123 Super Extra Credit: If you have a missense, intronic or other weird mutation. We should make a cell line which will allow further study. These cost ~$10k each, so we need to do a fundraiser, but we can help. #S10e SPRINT FOR SYNGAP1, EVERYWHERE – 29 days Get on the map! https://curesyngap1.org/calendar/sprint4syngap-2026 INAUGURAL SF NIGHT OF IMPACT, CA – 63 days Join us this is our only Gala for 2026! cureSYNGAP1.org/SF26 5TH SCRAMBLE FOR SYNGAP, SC – 191 days Classic case of a small event becoming an institution! cureSYNGAP1.org/Scramble26 SYNGAP1 Awareness Must watch this episode of Kelly and Kyle. Careful with those ASMs that challenge bone growth… https://curesyngap1.org/bones PUBMED Pubmed 2026 is at 18. Some great papers, but will discuss later. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date SOCIAL MATTERS 4,786 LinkedIn. https://www.linkedin.com/company/curesyngap1 1,540 YouTube. https://www.youtube.com/@CureSYNGAP1 11.1k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP stock is at $4.75 on 25 Mar. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10 Episode 202 of #Syngap10 #CureSYNGAP1 #Podcast
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    10 mins
  • We need to raise funds for the critical work of CURE SYNGAP1, join us with #Sprint4SYNGAP #S10e201

    We need to raise funds for the critical work of CURE SYNGAP1, join us with #Sprint4SYNGAP #S10e201
    Mar 6 2026
    Friday, March 6, 2026 - Week 10 WHAT DO WE NEED $ FOR? I talked in Episode 197 #S10e197 about scientific priorities, and in Episode 200 #S10e200 about areas of activity beyond science grants. All of this is what we need to fund. SPRINT FOR SYNGAP1 Sprint for SYNGAP is coming fast– 49 DAYS. Make a difference. Raise some money. Get on the map! Text sprint26 to 71777 https://curesyngap1.org/calendar/sprint4syngap-2026/ INAUGURAL SF NIGHT OF IMPACT Also to raise funds, please join us in SF on May 28th. 83 DAYS. Thanks to the organizational team Justin, Zoe, Ed, Jessica, etc. cureSYNGAP1.org/SF26 NHS Matter I talked in episode 198 #S10e198 about the importance of natural history studies. Check out this paper on Zuvenersen from Dravet to understand the long-term impact these studies could have. https://www.nejm.org/doi/full/10.1056/NEJMoa2506295 Join ProMMiS and Citizen Health. SHOUTOUTS Rosie Davilla on Univision curesyngap1.org/rosie2026 - https://www.univision.com/local/dallas-kuvn/syngap1-el-diagnostico-que-cambio-la-vida-de-rosie-en-texas-video #RareDiseaseDay Talks Emily Barnes @ Quiver; Paulina and Brian Sheehan @ Third Rock; Mike @ SparkNS; John Hill & Allison CNBC Cures. Beata’s double header SYNGAP1 Stories. Part 1. https://curesyngap1.org/podcasts/syngap1-stories/beata-tarasiuk/ DSCIII In addition to Colorado Children’s & Stanford we are now in a study at Boston Children’s, Rush and U Alabama aka UAB. Attending kick off for this at the end of the month. DATES TO TRACK Scramble for Syngap - 5th annual on October 3 in S. Carolina in 211 DAYS cureSYNGAP1.org/Scramble26 Conference in Denver CO! 271 DAYS. Sponsorship options in our #Prospectus for industry are available here https://curesyngap1.org/prospectus Science Day - cureSYNGAP1.org/SD2025Videos Family Day - cureSYNGAP1.org/FD2025Videos See our entire library of webinars & videos on YouTube youtube.com/cureSYNGAP1 BIOSAMPLES & EEGs! Biorepository needs more samples. Check out the list and map here https://combinedbrain.org/roadshow/ and contribute both blood & EEGs. The data and research we do with these samples is invaluable. Let us know if you are going, email our CSO@curesyngap1.org PUBMED Pubmed 2026 is at 12, just like last week but am I seeing some amazing manuscripts! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date Two particularly cool papers: HDAC Inhibitors https://pubmed.ncbi.nlm.nih.gov/41777621/ A positive missense causing cognitive resiliencehttps://pubmed.ncbi.nlm.nih.gov/41777621/ SOCIAL MATTERS 4,732 LinkedIn. https://www.linkedin.com/company/curesyngap1 1,535 YouTube. https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1 $CAMP stock is at $4.59 on 5 Mar. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10/ Episode 201 of #Syngap10 #CureSYNGAP1 #Podcast
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