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Support Clinical Trial Design for #SYNGAP1 via biobanks, EEGs and Fundraising. #S10e199

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 CSO@curesyngap1.org.

(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://docs.google.com/forms/d/e/1FAIpQLSd0eUt5PRiKvpta24CVVW8Jfmxv5ogH1QiS-ZCGEhFW3JhLTw/viewform?usp=send_form & Spanish: https://docs.google.com/forms/d/e/1FAIpQLSc5A4tTxx0qFj4jWdCDTcLWyp5KKMmdrTzElqwqSYprhX-fYQ/viewform
Latest Pod on NHS: https://www.youtube.com/watch?v=7W38uWKBIAw

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 https://www.youtube.com/hashtag/praderwilli Syndrome. https://www.linkedin.com/posts/graglia_syngap1-praderwilli-autism-share-7429579885985296385-zuIH

ETC

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/

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

Episode 199 of #Syngap10 #CureSYNGAP1 #Podcast

Below is a transcript from the video:

Mike Graglia:

Hello, Syngap Land. My name is Michael Graglia. Today is Tuesday, February 17th of the year 2026. We are in week number eight. This is episode 199 of the Cure SYNGAP1 podcast. Before I jump in, I just want to thank the team who are flat out right now. I have been floored at how busy we are and how full our staff meetings are and how everybody is going at full tilt. And I mean everybody. Virginie McNamar, our President and COO. Kathryn Helde, our CSO. Lauren Perry, our longtime operations lead. I want to also acknowledge Paulina Polanco has joined up the team and is doing great work on a number of fronts, as is Kimberly Frogozo, who is an admin who is helping our team. If you haven’t met Kimberly, maybe you’ve gotten a text from her. She’s fabulous. One of the things we’re flat out on is clinical trial design, right? There’s a number of companies, and the lead right now is CAMP4, thinking about exactly how to design a clinical trial, right? And as a reminder, historically, phase one is safety. You just do it in humans. Phase two is tolerability. Healthy humans. In phase three is when you actually test the drug for regulatory approval. But for genetic and precision therapies, you’re generally doing a phase one/two together. We don’t want to stick an ASO into a random healthy human. So phase one/two is our chance to show safety and tolerability but also to test things out. And that matters because how we’re going to show a Syngapian improve is something we don’t know because we haven’t done it before. I’ve explained this before. But as the thinking has evolved, you know, people start—people like to go to seizures because seizures just are very… you know, the tissues go up or down. It works. Okay, we’re winning. But in the world of rare genetic diseases, you sort of like, are we like Dravet, where you just have huge seizure burden and you want it to go down and then your drug worked? Or are we like Angelman, where it’s… the seizures are not something that you can measure as well. And there’s a lot of other things that will change when you help those humans. And on the Dravet to Angelman spectrum, where is SYNGAP1? And we’re starting to think that we’re probably more Angelman-like. Why are we saying this? Because measuring seizures in Syngapians is not easy. Measuring seizures in Syngapians is just… not that easy and we’ve gone round and round and I fully expect there to be long, clinical EEGs being done during trials, but I think it’s important for us to really start to talk about how we are more like Angelman when people are looking for a model for clinical trials. And as I was thinking about this and working on it, I found it very cool AES abstract, comparing Angelman and Syngap, both looking through the lens of a caregiver survey and through some claims data analysis. Claims data analysis, by the way, that was made possible by our ICD-10 code. You can’t do claims data analysis without an ICD-10 code. So log into your Ciitizen Health account and say: Does the ICD-10 code F78.A1 show up in my records? And if it doesn’t, call your clinician and make sure you get that ICD-10 code added to your records. But I don’t want to go down that rabbit hole right now. I just wanted to let you know, kind of some of the discussions, some of the thinking that was going on. So as we think about clinical trials and as we try to hone in on the perfect tool for us to use to design clinical trials, I want to turn on my do not disturb so things stop pinging. I want to remind you that we have a biorepository through our incredible partners at CombinedBrain, where you can give biosamples from your Syngapian and you can now also do EEGs. These biosamples and EEGs will be in the CombinedBrain repository, where the CEO is Terry Jo Bichell, who’s just an incredible Angelman mom, but the CSO is Dr. Lindsay Wieczorek, who is a Syngap mom. So we really are strong partners with them. And if you’re like, “Oh Mike, I want to bring my kid to the conference, Denver’s too far!” That’s fine. There’s conferences all over the country. If you go to combinedbrain.org/roadshow, you will now see a beautiful map and it will show you all the dates and all the locations from Texas to Florida to LA. Ellicott City, Maryland to Denver, Orlando, North Carolina, Ann Arbor, Michigan. They’re all on there, starting in March. There’s conferences of different rare disease groups where we are able to go if you register. So please consider making a contribution of both biosamples and EEGs. And by the way, we also need sibling controls for the EEG. So that might be a cool experience for a sibling to go to an EEG. And if you’re interested in contributing those biosamples, please email our CSO, whose email is very easy, cso@curesyngap1.org. And she will help you get registered. I want to give you a teaser, which I try not to do, but I’m so excited about this one. There is another device study coming up, which we’re going to be calling you guys to participate in. And I think this can be really cool. So anyway. Similarly, you’ve got to participate in the natural history study. I talked about this a lot in episode 198, Retrospective Ciitizen, Prospective PROMMIS. If you are waiting for an invitation to PROMMIS, episode 198 was it. Episode 199 is your reminder. Please take part in Natural History Studies. I talked about this in the last pod. Let’s talk about fundraising. Sprint for Syngap is upon us. Curesyngap1.org/Sprint. This is our annual peer-to-peer event. This is where you have a chance to set up a team in your hometown. I mean, set up an event in your hometown. And it can be like, “Hey, come to the park and let’s have a barbecue and we’ll run around the playground.” It can be a full-blown official 5K in your town. I think Sarah Driscoll is doing this. It can be anywhere in between. It can be just a massive block party, which is what the Tavillas and others do in Boston. Whatever it is you do, hurry up and do it. Get people to sign up. Get people to donate. It’s your chance to ask your friends and family and church and work and everyone to donate and support our important work. And also it’s a chance for you to remind all your friends, family, and church, work, and wherever that you’ve got a kid with this terrible disease and help them understand both that you have this burden in your life and that there’s hope and help on the way—very exciting. Similarly, we have fundraisers coming up in San Francisco on May 28th, Curesyngap1.org/SF26, and the Scramble for Syngap. The fifth annual Way to Go Julie will be held on October 3rd in South Carolina. Quick check on PubMed. We’re at nine publications for the year. Super exciting since we’re in week eight. As a reminder of why I get so thrilled about this stuff: back in 2018, which is the year Tony was diagnosed, we had 18 publications. We had 18 publications for the entire year. We’re on February 17th right now, and we’ve already got nine. So we are cruising, and hopefully we’ll continue to go at more than one a week. So we’ll be over last year and continue to have tremendous momentum for Syngap research. One of the papers that I noted—this, that’s new—connects Syngap with Prader-Willi syndrome, which is pretty interesting, right? I think it’s interesting that we’ve got all these different syndromes and diseases and this gene, this gene, this gene. But as we start to understand more how the genes work and interact, we’re starting to realize, oh—these two actually are the same. And that’s exciting because that could mean more interest and more research in these diseases if we can show a link and maybe researching a certain protein or mechanism could help us address two diseases, such as Prader-Willi syndrome, which is very well known. Anything whose last name is “syndrome” has been around for a while, right? So Prader-Willi syndrome and then SYNGAP1. In the et cetera category, I just want to give some shout outs. We’ve got some really cool Warrior profiles. If you do anything, subscribe to our Wednesday Warrior and read those profiles curesyngap.org/warrior. It’s a great way for people to introduce themselves to the community. Some people have started doing updates. It’s just very exciting. I also want to note that press release 42 came out, curesyngap1.org/PR42. That was about our grant to Dr. Donlin-Asp. You might say, well, I thought we did that a while ago. And I would say, yes, we did. We are way behind on press releases. And we just—there’s been so many pressing urgent matters that getting press releases out has just not bubbled up. But this is a great press release. Read it. And if you’re curious, Dr. Donlin-Asp gave a talk at our science conference. Very good talk. I thought his slides were really accessible and cool. And that is up on YouTube on our science page. Check it out. I just want to give a shout out to Sarah Driscoll. This will be her second shout out in this pod because I already gave her a shout out for organizing a 5K in Virginia, along with Sarah Sackley, by the way. But this is for her getting her story profiled in GeneDX. Links in the show notes. Just a little video she did. Really, really exciting. We’re making tremendous progress. We’re thinking about clinical trials. We need you to support us by attending fundraisers, by doing fundraisers through Sprint for Syngap, and by sharing your biosamples and your EEGs via the Roadshow. Thank you for listening. More exciting news is coming soon. I think, for episode 200, I want to share with you my priorities. We have a board meeting at the end of this week, and there’s just so many opportunities and priorities before the organization that I’m getting ready to present that to the board. And I might just share it here in a pod so that you understand a little bit of the many directions we are being pulled as an organization, which brings me to: hey, if you want to help in a big way or a small way as a project manager for something, as a support to one of the principles—like, I mean, Kathryn could use a project manager all day long. Let us know. We have a lot of opportunities to keep growing this community. In the right now category, make sure you’re following us on LinkedIn, YouTube, all the socials, LinkedIn especially. This is an important place to get our message out and to connect with researchers. Thanks for listening. Have a wonderful week.