Friday, June 19, 2026 – Week 25
June 21 is SYNGAP1 Awareness Day, but we have made it SYNGAP1 Awareness month! Why 6/21? Because 6p21.32 Donate! cureSYNGAP1.org/Donate
#ThisIsOursToLose & #BurdenHopeProgress watch #S10e208 https://curesyngap1.org/podcasts/syngap10/tony-update-thisisourstolose-more-great-results-from-camp4-nightofimpact-in-9-days-s10e208/
New family email, very good, lots of questions. It’s all here. Reach out, we are here for you and you are welcome in this community – you are part of it whether you like it or not.
Raise money. Join our host committee for 2nd SF event next year.
Believe that we are doing the best we possibly can, and you would be adrift without a PAG. If you think this is painful, imagine if we weren’t here!
Register for the Conference. Book tickets to DEN now. cureSYNGAP1.org/Denver
Join us — make this org better for all of us and all our kids for all their lives.
Complex work doesn’t fit neatly in 10 minutes anymore… Health Economics and Market Access work is going well, we will put out an RFP shortly.
NATURAL HISTORY
Goes On! Make sure you are in it. https://curesyngap1.org/resources/studies/syngap1-prommis/
Orlando/McKee Grant “Validating Remote Developmental Assessments in SYNGAP1-Related Disorders” cureSYNGAP1.org/PR49
🤖 ARI Sign up now, s/he keeps getting better, and then connect to Citizen Health, if you are not on Citizen Health, fix that.
KUDOS
- Our fifth MDBR, Justin Albrecht rode 70 remote in NC. Raised $2k.
- Rachel Jasiczek (Yah-she-check) was a guest on Remarkable Futures Podcast – https://open.spotify.com/episode/7dYmHcXEu58H4C8VCoZ9V1?si=x3xvui86TY2cyGHyS3mGDQ
- Collective: CURE SYNGAP1 Collective – cureSYNGAP1.org/PR48 Collective page – cureSYNGAP1.org/Collective
More fundraisers!
WARD – Shoot for SYNGAP on November 14th in Utah! https://fb.watch/HRnwf9FnEB/
Another in Boston in the works…
WEBINAR: Understanding ASOs & Informed Consent
June 30 4:30 ET https://curesyngap1.org/calendar/understanding-asos-informed-consent/
5TH SCRAMBLE FOR SYNGAP, SC – 106 days till October 3rd
Classic case of a small event becoming an institution!
cureSYNGAP1.org/Scramble26
CURE SYNGAP1 CONFERENCE – 166 days until December 3rd
cureSYNGAP1.org/Denver rooms available: cureSYNGAP1.org/DenHyatt for $159. In on Wed, out on Saturday.
USA: use your ICD-10, F78.A1: https://onlinelibrary.wiley.com/doi/10.1002/epi.70142
PUBMED
Pubmed 2026 is at 37. +12 vs the week. (61 last year was +9) https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2026-2026&sort=date
SOCIAL MATTERS
5,058 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 $4.13 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 210 of #Syngap10 #SYNGAP1 #CureSYNGAP1 #Podcast #PatientAdvocacy
Below is a transcript from the video:
[ 00:00:00 ] What’s up, Syngap-land? My name is Mike Graglia. This is episode 210 of the CURE SYNGAP1 podcast. Today is Friday, June 19th. We are in week 25 of the year 2026.
[ 00:00:10 ] Tomorrow, no— the day after tomorrow is June 21st, which is Syngap1 Awareness Day. Here at CURE SYNGAP1, every day is Syngap1 Awareness Day. And for this month, we’ve been doing a lot of… lot of, like, a daily drop on all social media of a different child every day. So, super, super great work, Ed and team. But 6/21 is Syngap1 Awareness Day. Why? Because the gene is located at 6p21.32, which is like the genetic address. Genes have a p-arm and a q-arm, and so we’re on the sixth chromosome, p-arm 21 to 20 or 32, whatever. 6/21 is our day.
[ 00:00:44 ] Celebrate the day. You all got a flyer in the mail. If you’re on our mailing list— if you did not get the flyer in the mail, then you’re not on our mailing list. Problem. Go to our website, sign up, make sure we know where you live. And a lot of people, I’m already seeing it, are taking pictures of their Syngapian saying, “I love someone with Syngap1.” That is the cover title for this podcast.
[ 00:01:04 ] Please share that. Use that if you need it. Email us. You can print it out. Take pictures. Raise awareness for Syngap1. As I was getting ready to do this pod, I went back and I listened to previous pods to make sure I don’t say things twice.
[ 00:01:17 ] I listened to pod 208, which is two pods ago. If you didn’t listen to that, please go back and listen to it. Links in the show notes. I talked about Burden, Hope, and Progress, which was the movie we made. And I talked about This Is Ours to Lose, how much good stuff is going on and how every family needs to participate and fundraise. Please, I don’t want to repeat those points today, but go listen to 208. It was a good one.
So I got an email from a newly diagnosed family. It was a very well-written email. Lots and lots of questions. How can we help? Is there a company that needs work?
[ 00:01:46 ] I’m going to get on the phone with them next week. I was actually just on the phone with another newly diagnosed family. They’re coming fast right now. It’s kind of like they come in waves. But right now, we’re kind of like whack-a-mole.
[ 00:01:57 ] And here’s what I’m going to say to this family.
[ 00:01:59 ] And you’re not going to be surprised to hear this: raise money. We are funding
[ 00:02:04 ] basic research, clinical science, and patient support every day. And the way it works is families raise money. We just had this wonderful event in— here in San Francisco, where we raised… over half a million dollars, wonderful. But each person raising $2,000 here, $10,000 there, $20,000 there, whatever the number is, every year— that’s how this operation keeps going.
And then we get to get clinicians and researchers to focus on Syngap1, and that’s how we move things forward, right? “Oh, but Mike, CAMP4 is going to start clinical trials.” Yeah, clinical trials take years, guys, and it actually drives us to need other research.
[ 00:02:42 ] Thank you. Work with us, help us raise money, and… and understand that the existence of CURE SYNGAP1 is a real feature, right? Please do not go rogue and say, “Well, my doctor knows somebody with a lab down the street, and my rich uncle is a friend of this university, and this guy says he could…” Don’t do that.
[ 00:03:01 ] We work in a thoughtful and coordinated fashion. We are funding dozens of grants right now that are nowhere near publication. It’s work that’s going on that we know about because we’re funding it. And if you go rogue and decide to fund this person over there or that person over here, they may or may not do something useful. They may or may not do something that we’ve already done, and they may or may not actually bring it back to the patients.
We have a PhD-level scientist on staff. I sit on a number of committees and know a lot of moving parts. Between the team that we have and the contacts we have, we are able to ensure that every dollar we spend goes as far as possible for kids right now. That’s what’s important. Please work with us. Please raise money with us. If you want to get involved, this community, this organization is here for you.
[ 00:03:48 ] Volunteer, let us know how you want to help. We will find work for you to do, and we will work together to make the future better for children with Syngap. Also, register for the conference, right? Conference is— we’re halfway through the year.
[ 00:04:01 ] curesyngap1.org/denver. Join us there. Um.
[ 00:04:05 ] I’ll just give you an example because, you know, I used to just be like, “Hey, we’re doing this, this, and this.” And it was so fun. 10-minute updates. Now it’s like… just explaining, like, one of the things I’m spending half this week on, it gives me a headache. And what it is, is it’s health economics outcomes research.
So we’re currently drafting an RFP to hire some economists to subject us— we’re going to pay them to make us suffer, which is confusing, but we’re going to do it. And we’re going to fill out all these surveys about how Syngap has affected our lives. And then they’re going to write a paper about the burden of this disease on families. And that’s going to be super important because once CAMP4 and other companies… get these ASOs through trial, then there will be a conversation about paying for these things.
[ 00:04:43 ] Health economics. If you’re an economist or if you want to help us work on this, this is going to be an important project that’s going to go for at least a year.
[ 00:04:51 ] Wow, guys, I mean, the stuff is complicated and nothing’s cheap. Okay. So natural history is going on. As you know, please, if you are in ProMMiS, keep going back every six to 12 months. If you are not in ProMMiS, get in ProMMiS. There are sites at Stanford, Colorado, and… CHOP.
What if it’s too hard for you to get to CHOP? What if you wanted to go remote? Well, good news. Press release 49 came out, like, a week ago. We gave a grant to Orlando and McKee, the famous Dr. McKee from CHOP— I should have known that. And we’re working on remote developmental assessments in Syngap1.
So this is really cool, because we’re trying to figure out how we can do telehealth. And one of the reasons I want to do this is because I think we’re missing the kids who are having the serious behavioral phase, kind of the teenage years. There’s a bit of a gap in our natural history data. And I think that’s because some of these parents just can’t imagine getting their kid out of the home. So we are investing— with donor funds— in doing natural history remotely. So that’s exciting. Now, the natural history is prospective.
[ 00:05:51 ] We’re looking at patients every six months. We’re looking forward to doing retrospective, to go back. You need to sign up for Ciitizen. Sign up for Ciitizen. If you haven’t signed up for Ciitizen Health, sign up for Ciitizen Health. All your medical records in one place, query it with an AI, amazing.
And they’ve just come out with something called Ari. So, if you’re already in Ciitizen, but you haven’t signed up for Ari, you don’t have Ari yet. ari.citizenhealth.com. You go into Ari. You give it your phone number. You sign up. You tell them about your kid. And you’re like, “Hey, Ari, I already have a Ciitizen account.” And then Ari gives you a link. And then Ari connects to Ciitizen.
And suddenly, you have got an agent. Not a little chatbot, but an agent who can draft letters for you, who can remind you about things, who can answer questions about things, who can query your kids’ records for you. It’s amazing. And for now, it’s free. Go try it out. The team at Ciitizen has just upgraded Ari, and I’m really impressed. I love my Ari.
[ 00:06:41 ] I want to do some kudos. The fifth Million Dollar Bike Ride happened. Our team there has gotten smaller and smaller. In the old days, UPenn used to match the money we raised, so we spent a lot of time and effort sending, like, a team. Now they don’t match the money, but some people still love riding bikes.
Justin Albrecht rode 70 miles. He raised $2,000 for us in North Carolina because he rode remote. Great job, Justin. Thanks for raising awareness about SYNGAP1 and thanks for those funds. We’re going to put them to good use. Rachel, yeah, she checked, was also a guest on a podcast about SYNGAP1. I love it when families get out there and start talking and start raising awareness. Get out there, start talking, start raising awareness. We cannot have too much awareness about Syngap1. I also want to give kudos to The Collective, Press Release 48.
[ 00:07:23 ] Links in the show notes. We’ve launched this CURE SYNGAP1 Collective where different organizations around the planet— Australia, Portugal, UK, Netherlands, et cetera, et cetera, et cetera, India, LATAM— are all using this CURE SYNGAP1 logo to make it clear to industry we are one team, we are working together, and we want to make it as easy as possible for industry to invest in Syngap1.
So press release came out about that. I don’t think I’ve already talked about that. Check out that press release. It’s tremendous work by Virginie. We are so lucky to have Virginie as our President and COO. I could not do this without her. The organization has just gotten bigger and bigger.
Now, more fundraisers— there’s two coming. The Ward family are doing Shoot for Syngap on November 14th in Utah, I think they’re in Utah. So it was a little reel there where Carly’s talking about that on Facebook. I share that in the show notes. And then there’s also the family in Boston are working on an event, I think, later in the year. So more on that when I have it. Super exciting.
[ 00:08:27 ] Now, FYI, June 30th, which is, like, I don’t know, 11 days from now, there’s a webinar on ASOs and informed consent. The webinar is being put on by a group called DEEP and our friends over at KCNT1, who are just a wonderful organization. And what they’ve got is they’ve got a great doctor down from San Diego who’s talking about ASOs and informed consent. If you’re thinking at all about being in a clinical trial with ASOs, which is what CAMP4 and others are doing, that might be worth your time. Go check it out. Go think about informed consent. Go start learning about ASOs. It is never too early to start getting ready for clinical trials. They are coming.
Wrapping it up. Scramble for Syngap is in 106 days on October 3rd down in South Carolina. Julie’s going to kill it. The CURE SYNGAP1 Conference is in 106 days— all right, 166 days on December 3rd and 4th in Denver. I already talked about this. Big news: we have a room block. We are at the Denver Grand Hyatt, which is fancy. And the rooms are only 159 bucks a night. How did we do it? I’m not sure, honestly, but we did it. It’s a great room rate. It’s going to be a great hotel. It’s going to be an amazing event. If you’ve been before, you know the drill.
[ 00:09:28 ] If you haven’t been before, do not miss it. This is when our community comes together with industry, with researchers, and we just kill it. If you have a Syngap diagnosis, you have an ICD-10 code. It’s F78.81. Make sure it’s in your medical record. If you have Ari, Ari can help you with that.
PubMed is at 37. That’s plus 12 versus the week. That means we’re on track to have a great year for research. Follow us on social media, especially LinkedIn and YouTube. Numbers are going up. CAMP4 closed at 4.13 yesterday. Thank you for listening. Thank you for being part of this community. Happy Syngap Awareness Day. Let’s keep going.