Tuesday, May 19, 2026 – Week 21
Personal Update via SYNGAP1 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.
- 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 - Send IMPACT REPORT – Tool for family, newly diagnosed & Fundraising.
cureSYNGAP1.org/Impact or cureSYNGAP1.org/Impact25 - 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/
44k 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
Below is a transcript from the video:
[ 00:00:00 ] Hello, Syngap Land. My name is Mike Graglia. This is episode 208 of the CURE SYNGAP1 podcast. Today is Tuesday, May 19th. We are in week 21 of the year 2026.
[ 00:00:10 ] Over the weekend, we dropped Syngap Stories episode 41. The link is CureSyngap1.org/stories41. I also have a link to the LinkedIn post in the show notes. In this episode, I shared a very personal update about Tony and his education and how Ashley and I came to the decision to place him into a residential school, which is a very big deal—something I never thought I’d do, and I could spend hours talking about it.
So instead of doing that, I just went ahead and did an interview with Joe Ashline. Thank you, Joe. I would encourage all families to listen to that. Not because I think it’s the right thing to do, but it’s what we did with Tony and it’s the right thing for us right now. And I just think it’s something families should think about because this disease changes. These kids get bigger, and these kids get harder, and these kids get more complicated.
[ 00:01:01 ] Let’s start on that note. News is Tony’s been there six weeks. I’m actually flying to see him tonight. I’ll be with him tomorrow. And the school’s really impressive. Lake Mary’s a really impressive place. I’m grateful. I’m grateful that everything’s going well. So anyway, check out Stories, episode 41.
[ 00:01:20 ] Other big news, we just dropped our impact report, which is dated 12-31-2025. So you could say, “Why did this take you five months?”
[ 00:01:30 ] The answer would be you get very thoughtful notes in there from myself, Virginie, Kathryn, Suzanne, finance.
[ 00:01:37 ] And you get beautiful graphic design from Lauren, and it took a lot of time to put this together, but this impact report is really, really good. And I want you guys to check it out, CureSyngap1.org/impact will take you to all our impact reports and you can click through to the 2025 one there. And if you just want to go right to the document, CureSyngap1.org/impact25, so really simple.
Check out that report. Give it to other people in your family to tell them about CURE SYNGAP1, to help them understand that this organization is fighting for your loved one. Give it to other newly diagnosed families and use this when you’re fundraising. If people say, “Why does this organization need money?” give them this report. Show them what we do. We do a lot for these patients.
And as I have said before, and I will keep saying, if you have a loved one with Syngap1 and you are not throwing all your strength and your effort into fundraising for us and supporting the work we do, you really don’t understand that. Um, this is ours to lose. This is ours to lose. We have made amazing progress in eight years.
[ 00:02:39 ] We are going to continue to make amazing progress, but it takes money. The opportunities that are falling in our lap right now are because we have earned the respect of a lot of partners, and we need to act on those opportunities. That means staff time. That means resources for grants, resources for scientists. So we need to raise money. We need everyone in our community to raise money.
If you can raise big money, great. If you can raise small money, also great. Because if a lot of people raise small money, that’s big money. We all need to do what we can to advance this mission, because there’s one organization in the United States who fights nonstop, single-handedly for Syngapians, and it’s CURE SYNGAP1.
Um, on that note, we did a cool video called Burden, Hope, and Progress. You heard me talk about it. We released it 11 days ago on YouTube. It already has over a thousand views. That doesn’t happen with our videos. This is a really good one. If you haven’t seen it, check it out, CureSyngap1.org/burden—we have really cool titles. I also share the LinkedIn post. Anyway, share that and then also share CureSyngap1.org/donate, right?
[ 00:03:39 ] We’re creating this collateral. It’s really hard. If you’re talking to a family member, friend, whatever—what is Syngap1? Oh God, headache. But you can be like, “Look, watch this video. Check it out. Watch this video and then call me.” And that can help you start the conversation. And then if they’re like, “Wow, this sounds cool, how do I help?” give them the impact report. Ask them to donate. Video, impact report, please donate. That’s all you got to do. I’m going to put that in here.
[ 00:04:04 ] Your top three. Your top three. That was good.
[ 00:04:09 ] CAMP4, a couple updates on CAMP4. First of all, they’re joining us for the Night of Impact. The Night of Impact—we’re having our inaugural, the first one, Night of Impact fundraiser here in San Francisco in nine days. I want to thank Justin, and Paulina, and Jess, and Chelsea, and Suzanne Jones, and everybody else on the team who’s working so hard to make this a great success. It’s going to be amazing. It’s in nine days.
Um, CURE SYNGAP1, I mean, CAMP4 is sending some of their brass to come, which I really appreciate because it’s a long flight from Boston. Um, Stoke, Acadia, BioMarin, Gondola, and others will also be there. So it’s just going to be a great first meet, a first San Francisco fundraiser, and it will become an annual event.
But back to CAMP4. They released a press release saying that they have new preclinical data demonstrating CMP-002 improved seizure threshold and severity in a model of Syngap1. What does that mean in English? Preclinical data means we haven’t put it in humans yet. CMP-002 is their drug for Syngap.
[ 00:05:10 ] Improve seizure threshold and severity in a model. What this means is that they took a model of Syngap1—it’s rodents, right?—and they, who have Syngap1, and they, um, gave them stuff to induce seizures because, again, like the humans, the rodents have a lot of absence seizures, hard to count. There’s this thing called seizure threshold.
And these rodents were having seizures. And when you gave them this drug, they had seizures right away. But when you gave them the drug to induce them, and then when you give them CMP-002, that threshold changed, right? We were able to stop seizures in these Syngap mice.
This gives us more confidence on top of the existing data in non-human primates, little monkeys, on delivery; on top of existing data in mice; on top of existing data in cell lines. This gives us even more confidence that when this drug comes to humans, it could really be a disease-modifying therapy and could change the lives and the futures of our patients and their families. So, super exciting. Congratulations, CAMP4, for that press release. Fingers crossed that it’s all going to come together.
Night of Impact, nine days. If you’re in South Carolina, the fifth annual Scramble—Julie Miles deserves a medal. Fifth annual.
[ 00:06:21 ] It’s in 137 days. She’s amazing. Not too early, by the way, to pre-register for the conference, CureSyngap1.org/pre. It is in 198 days in Denver, Colorado. It’s going to be an amazing conference. It’s going to be an amazing conference. I mean, this is, this is, we’re going big time, guys.
[ 00:06:38 ] Hopefully, CAMP4 will have dosed some humans by then. Hopefully, other companies will be getting closer. There’s a lot of reason you want to be together. You know, CURE SYNGAP1, we’re this huge organization that does all these things. And then, for two days, we all come together and you see it and you feel it and you can touch it. And it’s incredible. So, if it’s at all possible, if the sacrifices are makeable, please come to the conference. No one regrets it.
As a reminder, we have an ICD-10 code F78.A1. That’s good. It’s good to get a tattoo, get your mutation tattooed, and then get F78.A1 tattooed. And when you are going into your medical appointments with any doctor, any doctor, they always put in their medical record notes a diagnosis and a treatment code so they can bill it. Make sure that they can put multiple diagnoses. So make sure they add F78.A1.
Why is this important? Because companies over time search huge databases of billing records and they look for that code and they say, “This is how many Syngapians there are.” So if you don’t have F78.A1 in your medical record, you’re not being counted. Please make sure it’s there.
[ 00:07:40 ] A couple numbers, and I want to get back to the impact report. PubMed is at 31. That is plus 10 compared to the week we’re in, 21. Last year, we ended the year with 61 papers, so plus nine. So we’re in great shape. It looks like we’re going to have even more papers this year, which is just keep—we’re just keeping the hockey stick going. There’s a lot of Syngap work happening. CURE SYNGAP1 is not solely responsible for that, but we’ve definitely played a part.
LinkedIn, we’re at 4,964. What does this mean? It means we’re almost at 5,000, and I really like LinkedIn. YouTube, Twitter, Insta, follow us there. CAMP4 closed at 4.56 yesterday.
Let’s get back to the impact report just for one minute, please, because this is such an exciting, exciting report. I can’t even tell you guys how much I love it. So I click on the impact report page and then I click on this beautiful cover. This beautiful cover starts with pictures of our kids and this took longer than a minute, and it was worth it. I love this cover. I love seeing these faces, and I can pretty much look at every face on here and know which family this kid is connected to, and it just makes me even prouder of our community.
[ 00:08:42 ] Page two is a letter from me talking about our influence and our rebrand.
[ 00:08:49 ] On page three, I talk about our investment and our partnerships. These are why we’re successful. We need you guys to be part of this. Come and help.
Virginia starts talking on page four about organizational growth, foundational growth, our people, our data and tools, PROMISS, which is foundational to our success, community and advocacy. There’s an amazing map on page six, which is where we all are. Page seven, we talk about global collaboration. Honestly, that could have been a whole report, but there’s a cool graphic on there.
[ 00:09:16 ] Page eight, we talk about what’s coming next—an amazing picture in there too. And we are going to mail this out to all families, but check it out online.
Kathryn just takes the gloves off on page nine, talking about a lot of our science work. Same on page 10 where you can see grants. Page 11 the conference. Page 12 future priorities—the biorepository, Ciitizen, and CombiOmics. Please take part in all of these. Page 13,
[ 00:09:43 ] we talk about money, financial highlights, and then Suzanne brings it home on 14 and 15 talking about community engagement.
Guys, read this report. Share it with your friends. Page 15 talks about what you can do. Thanks for listening. Have a great week.