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 Health
https://www.citizen.health/partners/srf
CC/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 Dravet
https://www.tandfonline.com/doi/full/10.1080/14737175.2025.2562118
Citizen AI Advocate avail. for SYNGAP1 families https://www.linkedin.com/posts/curesyngap1_syngap1-curesyngap1-raredisease-activity-7378443770201047040-ORGj
$CAMP starts GLP Tox https://www.linkedin.com/posts/camp4-therapeutics_syngap1-activity-7379142427149881344-cBFE
CF initiates coverage at Overweight https://www.investing.com/news/analyst-ratings/cantor-fitzgerald-initiates-camp4-therapeutics-stock-with-overweight-rating-93CH-4268395
$CAMP $2.98 at close on 10/2 https://www.google.com/finance/beta/quote/CAMP:NASDAQ
CIRM funds SYNGAP DISC0-17998 grant proposal from Iris Medicine team, in collaboration with Dr. Gene Yeo’s team (UCSD) https://www.cirm.ca.gov/about-cirm/newsroom/press-releases/cirm-approves-73-million-in-awards-for-discovery-research/
Scramble in SC on October 4th linkedin.com/posts/julie-miles-4294322ba_scramble-for-syngap-activity-7370558331611971585-iw0A
CURE SYNGAP1 Conference 2025 Atlanta https://curesyngap1.org/events/conferences/cure-syngap1-conference-2025-hosted-by-srf/
USE YOUR ICD-10 F78.A1
e185 https://www.youtube.com/watch?v=dale0NbxDpU
SOCIALS
4,381 LinkedIn. https://www.linkedin.com/company/curesyngap1/
1,450 YouTube. https://www.youtube.com/@CureSYNGAP1
11k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1/
Episode 186 of #Syngap10 #CureSYNGAP1
Below is a transcript from the video:
Mike Graglia
[00:00:00] Hello, Syngap land. My name is Michael Graglia. This is episode 186 of the Cure Syngap1 podcast. Today is Friday, October 3rd. Is that right? Yeah, it is. Year 2025, week 40 of the year. This week, two days ago, like clockwork, the incredible Cure Syngap 1 census team announced an updated census number of 1,675. You’re going to say, ‘Hey, that’s only like 30 more than it was last quarter. What’s going on? And I would encourage you to click into the article and then go to the Google sheet and see what’s going on. Especially those of you in the UK, the UK number hasn’t moved for like a year. I don’t know what’s going on guys but we got to count and report out how many patients we have in every single geography. Clinical trials are coming and this census gives us a chance to communicate to industry where they should go to do trials. So, if your country’s number is low, that’s not helping you. Please work with us to improve the census, and we’re going to keep publishing it every single quarter. There’s a really strong team. At Cure Syngap1, working on the census, we reach out to patients, we confirm the mutation, we do all the things. Work with us guys. Help us get this number higher and higher. Because remember this is a lagging indicator. This is the number of people we have found that have a diagnosis. There’s people who have a diagnosis that haven’t reached out to us and there’s people who have like variants of uncertain significance. There’s people who still haven’t been diagnosed. So it’s a solid number, but we need to build on it, and we need to make sure it’s as big as it possibly can be. I want to congratulate an SRF volunteer, Rachel. Her little baby, I think is three and she’s just jumping in. She’s getting a master’s in special education and she made a handout for educators. So the second link in the show notes is a blog from Rachel about her work, her graduate studies, and this handout she made for educators. You can click on it in the blog. You can download that handout. You can give it to your teachers at your school. Rachel did a lot of research. There was a lot of discussion on Slack about it. It’s great work. It’s a valuable asset for families. Go for it. The other valuable asset for families is Citizen. Guys, you’ve got to sign up for Citizen. If you are stateside and you have not signed up for Citizen, get over to Citizen Health and sign up. Not only do you get, free access to all your medical records in one place, but they also have this super cool AI advocate right now, which you can use to interrogate your own medical records. It’s great. It’s amazing. It’s HIPAA and GDPR, it’s all the things. And it’s like, ‘Hey, when did my kid get this? Or what are my kid’s ICD-10 codes or whatever? Speaking of ICD-10 codes, by the way. I’ll talk about that at the end. Anyway, if you’re not signed up for Citizen, shame on us for not yelling at you guys enough to sign up for Citizen. Sign up for Citizen. And the third, fourth link in the show notes now. Is, helps you see what can happen. So a team in Canada got their hands on the Citizen data and wrote a paper saying, ‘Hey, neuromodulation seems to help some Syngap patients.’ Not all. It’s not a conclusive. It’s not like a, whoa, but it does say we went through all the citizen data and we found a number of patients really got improved results from using a VNS, a vagus nerve stimulator. And then there were mixed results with a corpus callosum. Whatever the CC is called, where they basically separate the two halves of the brain. These are two interventions that we use to reduce seizure burden in patients and just because your kids’ seizures are because of genetics, it doesn’t mean that a surgical intervention can’t help them. And I certainly have noticed there’s a number of people in our community who have a VNS and it’s been game-changing. And they know it’s been game-changing because I’ll use Lauren as an example. Will was on a VNS and I share and I use their names with permission. Will was on a VNS. The battery ran out, happens like every, I don’t know, 10 years, five years, whatever the number is and his seizures and his behaviors got a lot worse. And then they put a new battery in there and good old will came back. There’s really something to this and that was the most exciting thing about this nice published paper with all this data that you can read and download from links in the show notes is not a single patient had to lift a finger and do anything because all that data from all of us signing up for Citizen was already in the data set. So the researchers went to Citizen, got the data, wrote a paper about Syngap1 and VNS and we did zero extra work and it cost us zero extra money. That is what I call living the dream because a VNS paper is something I’ve been saying we’ve needed for at least a year now. The more I hear from Lauren about how powerful it is, I’m like, wow, that’s amazing. Again, guys, Citizen— it’s more than a nice tool. It’s more than a way to get data to industry. It’s a way to get data to researchers and to learn more about our disease. Please use it. And I will note that this paper on the CC and the VNS is sort of along the lines of a paper that Dr. Perry, Dr. Perry is a big deal. He’s down in Texas. He’s at Cook Children’s, and he wrote a paper about neuromodulation, which is just a fancy word for affecting the brain with other stuff like CCs or VNS for Dravet. So interesting paper there. I share that if you’re curious. I also share a post that we did reminding everybody that the Citizen AI Advocate is available to you. There’s no good reason not to sign up for Citizen, guys. They are best in class. They get awards after awards. We should be using them. We have been partnered with them for a long time. I want to also, big news this week, CAMP4 announced they have started GLP Talks. GLP Talks is where they stake increasing amounts of this ASO into non-human primates, aka probably monkeys. And they see at what level it is toxic. And they’re actually going, they’re actually looking for a toxic level. The FDA wants to see, okay, what was too much? So that when we dose humans, we are way below that, right? And this is the last step that what GLP Talks is expensive because you got to get monkeys and you eject them and you measure them, do all these things. And, the fact that they started GLP Talks tells us that the fundraise allowed them to progress with their Cure Syngap1 program. And guess what? Next step is clinical trials. Clinical trials set for second half of 2026. So buckle up. I also want to point out my little CAMP4 section. Cantor Fitzgerald, which is another big house on Wall Street, initiated coverage of CAMP4, and their article was really good. I won’t read it to you because I’m trying to keep this under 10 minutes, but click on that. They say a lot of nice things about CAMP4 and about their program on Syngap. It’s pretty exciting. Camp closed at $2.98 yesterday. Pretty exciting. Pretty exciting. So that’s a company to watch, guys. My prediction is that they will be the first company to do clinical trials in Syngap1, so I’m going to keep talking about them. We should pay attention. I want to thank the California Institute for Regenerative Medicine. It’s like a big entity here in California that funds scientific research. They just funded a DISC grant, number 17998. This was from a company called Iris Medicine in collaboration with Dr. Yeo’s team at UC SD in San Diego. And they got, I think, about $3 million to test Iris Medicine’s technology on SYNGAP1. And the way we found out about this is Iris reached out to Zoe, one of our volunteers, and said, ‘Hey, we watched your video.’ And would you speak at a CIRM meeting on behalf of Syngap? And Zoe called us, and we talked to Iris, and we were like, ‘Oh, this is real.’ And Zoe gave an amazing speech. It was really good. I might ask her to just publish it, actually. Zoe, can you publish that as a blog? It was a great speech. And CIRM voted to approve. So that’s $3 million from the California Institute of Regenerative Medicine, who, by the way, also sponsored our conference last year in California. Thank you, CIRM. And that will be another biotech that will prove concept for Syngap1 in animals and in a dish and maybe we’ll one day get to humans. And that was $3 million we didn’t spend. So this is the power of advocacy, guys, right? By having our advocates out there by telling the story of Syngap1 by getting on the phone with people the second they call. We are able to make sure that people who want to work on SYNGAP1 can make progress and move fast. So thank you, Zoe, for your great speech. Please publish it. Congratulations to Iris Medicine and Dr. Yeo. I hope I’m saying that correctly. And thank you, sir. Tomorrow, tomorrow, Julie Miles and Lauren and many other families. The Get the Heads and the Albrechts, I think, are helping to sponsor this, are doing the Scramble in South Carolina. It’s going to be amazing. It’s going to be amazing. Thank you, Julie Miles. CURE SYNGAP1 conference is in exactly two months, guys, December 4th and 5th in Atlanta, join us. It’s going to be a big deal. And then, if you didn’t listen to episode 185, I do put the link in the show notes to the YouTube. Hi, Benjamin. Hi, Beata. I love comments in YouTube, guys. Just write something nice to me there so I know someone’s listening. I talked a lot about our ICD-10 code. Punchline is use your ICD-10 code, right? Use your ICD-10 code. Dr. Law’s paper, which I talked about in episode 185, demonstrates that not enough people are using the ICD-10 code and you want that code all over your kid’s record. Follow us on LinkedIn, on YouTube, on Twitter, on Insta. Links are in the show notes. Thanks so much for listening. Have a wonderful weekend. You guys in South Carolina, have a wonderful time. Theere’s so much good work going on in Syngap land, guys. It’s just amazing. And as the year ends and I have a few seconds left, I want to challenge everybody. What will your year-end fundraiser look like, right? Will you be encouraging your family and your friends to donate to SRF? There’s a lot of exciting projects happening and we can continue to improve the research and the understanding of our kids by raising funds and using them smartly and that is what our board and our CSO and I and our president all work on around the clock. Thank you so much for listening. Thank you for your support. Have a great weekend.