Advertise on podcast: CURE SYNGAP1 PODCAST aka SYNGAP10

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

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

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

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/connect Have an annual call with Lauren Subscribe 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/roadshow Give 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-glossary https://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

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 [email protected] 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

Wednesday, February 25, 2026 - Week 9   Thank you Virginie, Eric & Paulina for being in Cold DC right now with the Everylife Foundation!  https://www.linkedin.com/posts/curesyngap1_raredc2026-syngap1-curesyngap1-activity-7432425642295586816-IVDQ   NATURAL HISTORY STUDY Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS And now the Citizen Health App on iOS https://www.linkedin.com/posts/graglia_your-advocate-is-now-with-you-in-every-moment-activity-7432260543748579328--dva   Board meeting… key message, we are much more than fundraising, grants and patient support.  Here is our list of non-grant projects.   Fundraising Regulatory - Industry Regulatory - FDA Clinical Trial Readiness Standard of Care Patient Engagement Health Economics https://www.linkedin.com/posts/graglia_the-economic-impact-of-caregiving-for-individuals-activity-7431827551574011904-HvA4 Global Coordination Next steps with NALL Patient Support Next steps with Nortriptyline   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 [email protected] FUNDRAISING - SPRINT4SYNGAP Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links: Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26 Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26   PUBMED Pubmed 2026 is at 9, 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 (Remember we had 18 in all of ‘18)   SOCIAL MATTERS 4,700 LinkedIn.  https://www.linkedin.com/company/curesyngap1 1,530 YouTube.  https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1   $CAMP stock is at $4.70 on 24 Feb. ‘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 200 of #Syngap10 #CureSYNGAP1 #Podcast

Tuesday, February 17, 2026 - Week 8   We are flat out, thank you to the team who work full-time on SYNGAP1: VM KAH LP PP & KF.   CLINICAL TRIAL DESIGN We are Angelman-like. (Rett also) https://aesnet.org/abstractslisting/differentiating-key-symptoms-of-angelman-syndrome-as-and-syngap1-via-caregiver-reported-and-us-claims-data-to-understand-differences-between-how-providers-and-caregivers-view-impacts-on-patient-care Dravet or Angelman?  Phase 1/2 is when we try it all.  EEGs and NHS help with this effort.   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 [email protected].   (Stay tuned for another exciting device study…)   NATURAL HISTORY STUDY Sign up for Citizen Health cureSYNGAP1.org/Citizen and ProMMiS cureSYNGAP1.org/ProMMiS NHS Survey in English: https://curesyngap1.org/SurveyProMMiS & Spanish: https://curesyngap1.org/encuestaProMMiS Latest Pod on NHS: https://youtu.be/7W38uWKBIAw?si=lCrffwMXidmYWz7t   FUNDRAISING - SPRINT4SYNGAP Sprint is April 25 - our calendar page - cureSYNGAP1.org/Sprint - has all the information in the following links: set up your team - cureSYNGAP1.org/Sprint26 resource guide for your event - cureSYNGAP1.org/S4SGuide webinar #99 to help get you started - cureSYNGAP1.org/S4S25   Also, May 28, San Francisco, CA: cureSYNGAP1.org/SF26 Scramble for Syngap - 5th annual on October 3 in S. Carolina cureSYNGAP1.org/Scramble26   PUBMED Pubmed 2026 is at 9! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date (Remember we had 18 in all of ‘18) Cool connection to #PraderWilli Syndrome. https://www.linkedin.com/posts/graglia_syngap1-praderwilli-autism-share-7429579885985296385-zuIH   ETC - More warriors cureSYNGAP1.org/Warrior - Dr. Donlin-Asp Press Release cureSYNGAP1.org/PR42 see talk here https://www.youtube.com/watch?v=lR8qcZK-9ro - Bravo Sara Driscol and GeneDx https://www.linkedin.com/posts/genedx_beyondawareforrare-ugcPost-7427763511235248129-QPPL?utm_source=share&utm_medium=member_desktop&rcm=ACoAAAAD8f4B7JC4TMss45Q8hrsq5kiceI0Z8HE   SOCIAL MATTERS 4,686 LinkedIn.  https://www.linkedin.com/company/curesyngap1 1,520 YouTube.  https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1   $CAMP stock is at $3.85 on 17 Feb. ‘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 199 of #Syngap10 #CureSYNGAP1 #Podcast

Thursday, February 5, 2026 - Week 6 Happy #RareDisease & #BlackHistory Month!   #NaturalHistory means how this disease progresses.  Reminder: We have only been at this for 17 years, first patients were identified via Hamdan, 2009. https://pubmed.ncbi.nlm.nih.gov/19196676/   Retrospective Digital NHS: cureSYNGAP1.org/Citizen (Growing list of tools available to families, for free)   Prospective Multi-disciplinary Multi-site NHS: ProMMiS cureSYNGAP1.org/ProMMiS   Reminder, only possible by CS1 support for non-CHOP sites and travel plus huge gift to Penn. https://www.chop.edu/news/25-million-gift-penn-medicine-and-children-s-hospital-philadelphia-establishes-center-epilepsy   Potential for being a control arm in the future.   Protocol: https://www.linkedin.com/posts/curesyngap1_syngap1-stxbp1-dee-activity-7425223573134327808-SVEQ & early data: https://pubmed.ncbi.nlm.nih.gov/40119723/   Join the ~160 families who have enjoyed excellent clinical care and contributed tot he future of SYNGAP1.  Today, a 4 month old is going! CHOP: 119 new, V2- 67, V3- 32, V4- 10, V5- 4 CHCO: 37 new, V2- 7 Stanford: 8 new, V2- 2 Total: 164 (double counting one family who goes to multiple sites)   Survey English: https://curesyngap1.org/SurveyProMMiS Spanish: https://curesyngap1.org/encuestaProMMiS   94 Responses to survey, so far: Why not? Did not receive an invitation, Too far to travel, Too expensive Barriers: Logistics, Cost, Time off, Behaviors, Insurance   ETC. Pubmed 2026 is at 6!  But will soon be 7 with the McKee paper! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date   Biorepository needs more samples.  Check out the list and map here https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit?usp=sharing and contribute blood.  The data and research we do with these samples is invaluable.   May 28, San Francisco, CA: cureSYNGAP1.org/SF26   SOCIAL MATTERS 4,668 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 1,520 YouTube.  https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/   $CAMP stock is at $3.59 on 5 Feb. ‘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 198 of #Syngap10 #CureSYNGAP1 #Podcast

All US Families, please take the time to fill out the ProMMiS Survey. It takes 5 minutes. It's super important. Even if you haven't been there, we need your feedback. English: https://curesyngap1.org/SurveyProMMiS   Spanish: https://curesyngap1.org/encuestaProMMiS   Our funding priorities for 2026 are Genetics, Behaviors & Isoforms. https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-grants-activity-7421952845693788160-EHeK    Pubmed 2026 is at 6! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date   Coolest paper on Pubmed… GC rich areas were missed, so not only do we need to push for testing, but also REtesting. https://pubmed.ncbi.nlm.nih.gov/41577710/   Bravo to CURE SYNGAP1 Poland (please send me a shirt) & thank you to CAMP4 Event: https://www.linkedin.com/posts/curesyngap1_it-was-a-day-to-remembera-perfect-combination-activity-7422379922578587648-wNBP   Don’t move to or from US/EU/LatAm etc.  This question keeps coming.  Please stay where you are and advocate like crazy.  Set up CURE SYNGAP1 [Your location]   Biorepository needs more samples.  Check out the list and map here https://docs.google.com/presentation/d/1IjaHILXj7AlBDlbTJgvYrkBS_0bnI8VCnTIiPXJ7JGM/edit?usp=sharing and contribute blood.  The data and research we do with these samples is invaluable.   Annual update to Champions of Hope! https://curesyngap1.org/champions-of-hope/    May 28, San Francisco, CA: cureSYNGAP1.org/SF26    SOCIAL MATTERS 4,661 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,520 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $3.83 on 27 Jan. ‘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 197 of #Syngap10 #CureSYNGAP1 #Podcast

Friday, January 16, 2026 - Week 3   Stoke Phase 3 Rapid Recruitment - A timeline that is ours to beat! https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-updates-timelines-completion   If Marcin can make it from Poland, you can make it from where you are! cureSYNGAP1.org/Marcin   CAMP4 Website is great and features Dani Williams! https://www.camp4tx.com/   Newsletter is out! https://cureSYNGAP1.org/NL49    Sara Driscoll Genetic Testing Story - Share it or copy it! https://cureSYNGAP1.org/GenTest   Pubmed 2026 is at 3! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date   SOCIAL MATTERS 4,604 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 1,510 YouTube.  https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/   $CAMP stock is at $5.78 on 15 Jan. ‘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 196 of #Syngap10 #CureSYNGAP1 #Podcast

Saturday, January 10, 2026 - Week 2   Here are key talking points to reference when talking about SRD.   Please let us know your thoughts about how these could be better. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing    SOCIAL MATTERS 4,546 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $6.20 on 8 Jan. ‘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 195 of #Syngap10 #CureSYNGAP1 #Podcast

Friday, January 9, 2026 - Week 2   Big news in SYNGAP-land, Becky Quick and Matt Quayle have a beautiful SynGAPian named Kaylie & they are launching CNBC Cures! - Wonderful to have more awareness of SYNGAP1, I hope it leads to more diagnoses. - My two favorite quotes from the episode and podcast: “There is no Mission without Money”-BQ & “She has reset our whole life plan…one day I’m going to be gone and is Kaylie going to be ok?”-MQ - Here is our page with all the links! https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-cnbccures-activity-7415094066675216387-32wF curesyngap1.org/kaylie   It's important for us all to remember that it can take time to find our voice. And then use it.   Speaking of using our voice, what can you say? We worked yesterday on Key Talking points which will live here and I will talk about them in the next episode.  https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing   First paper of 2026, Challenges of Caregiving in SYNGAP1, STXBP1, and TSC. https://pubmed.ncbi.nlm.nih.gov/41405416/   PUBMED is at 1 for the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date   SOCIAL MATTERS 4,546 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ 1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1 11.2k Twitter https://twitter.com/cureSYNGAP1 45k Insta https://www.instagram.com/curesyngap1/   $CAMP stock is at $6.20 on 8 Jan. ‘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 194 of #Syngap10 #CureSYNGAP1 #Podcast

Friday, January 2, 2026 - Week 1   #SynGAPCensus = 1,707 https://curesyngap1.org/blog/syngap1-census-2025-update-32-q4-2025-1707/   From the Cantor Report on CAMP4  The Stockdale Paradox. The best way to succinctly describe CAMP4 and the parties driving progress in this field (Cure SYNGAP1, families, researchers) is, for anyone familiar with Jim Collins' book "Good to Great," they have fully embraced the "Stockdale Paradox": To succeed in difficult circumstances you must 1) confront the brutal facts (severity of the disorder, devastating impact on patients and families, lack of treatment) while 2) maintaining unwavering faith that you can and will prevail in the end. It gives us conviction that there WILL be a therapy approved for SYNGAP sooner than later and CAMP is most likely to deliver it.   Read more on Jim Collins site: https://www.jimcollins.com/concepts/Stockdale-Concept.html   This is exactly what SYNGAP1 Argentina achieved at our conference.  Acting with certainty that they can and will prevail.   Check out their exceptional flyer: https://drive.google.com/file/d/1O_DldABKTkB9ZLIiUBqXGBMrtlzie-7i/view?usp=share_link    PUBMED is at 59 for the year, that is +4 over our best year, last year.  177 since 2022, almost half of our SYNGAP1 Knowledge (366) has been created in the past 4 years! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date    #20Posters Speaking of publications, I talked about 16 posters at AES this year and shared on LI, but I was wrong in the responses I realized we are up to 20! https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-activity-7408291479187755008-rMru    Mutation Tattoo Story https://www.linkedin.com/posts/shriya-bhat-0b845b203_at-a-patient-advocacy-meeting-in-nashville-activity-7409304451821277184-TO0t    SOCIAL MATTERS 4,529 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,500 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $6.00 on 2 Jan. ‘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 193 of #Syngap10 #CureSYNGAP1 #Podcast

Saturday, December 20, 2025 - Five days till Christmas, 11 days left to raise funds to CURE SYNGAP1 AES was exceptional in many ways, here are a few: Rare & SYNGAP1 were both very visible, posters with our Logo and names of staff were seen! Posters: https://www.linkedin.com/posts/graglia_syngap1-curesyngap1-activity-7408291479187755008-rMru Our conference was standing room only and had investors!  Even got a mention in their research report! https://www.investing.com/news/analyst-ratings/cantor-fitzgerald-reiterates-overweight-rating-on-camp4-therapeutics-stock-93CH-4403281 ProMMiS Launch was a massive win for patients.  Collaboration. Praxis and Lundbeck recruited for exciting drugs and CAMP4 talked about their ASO and recruiting next year. Our community's presence was felt well into AES. Aaron's post on growth! https://www.facebook.com/aaron.j.harding.5/posts/pfbid0231DtMVUtkZa4eXLv8C8qbf4xEN95aRP1xJ8sGNNvun7aDuUyZVatMWUjjigdXfg1l    Pre-register now for Denver: cureSYNGAP1.org/Pre26   Fundraising. We are YTD $1.68M which is below $1.86M in ’23 and $1.97M in ’24.  We need to really double down on fundraising for the next two weeks and into next year.  Support our campaign at curesyngap1.org/unlock   ACTION ALERT 🚨Call Bernie and urge him to help children at NO COST to the USG by supporting the PRV. (202) 224-5141 https://www.linkedin.com/posts/christine-waggoner-71b1555_mibagents-makeitbetter-osteosarcoma-activity-7408186315592085504-A6AY    PUBMED is at 58 for the year, that is +4 over our best year, last year.  187 since 2022, more than half of our SYNGAP1 Knowledge (365) has been created in the past 4 years! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date    SOCIAL MATTERS 4,519 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,490 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $6.38 on 19 Dec. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ   Like and subscribe to this podcast wherever you listen.  https://curesyngap1.org/podcasts/syngap10/ Episode 192 of #Syngap10 #CureSYNGAP1 #Podcast

#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/imfxmwG    See you Thursday at the CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/   SOCIAL MATTERS 4,474 LinkedIn.  https://www.linkedin.com/company/curesyngap1/  1,480 YouTube.  https://www.youtube.com/@CureSYNGAP1    11.2k Twitter https://twitter.com/cureSYNGAP1  45k Insta https://www.instagram.com/curesyngap1/    $CAMP stock is at $3.80 on 26 Nov. ‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ   Episode 191 of #Syngap10 #CureSYNGAP1