It’s time to UNLOCK THEIR TOMORROW – let’s raise funds. Also: CAMP4 and our name. #S10e188
Sunday, November 9, 2025. Week 46.
End of year campaign: UNLOCK THEIR TOMORROW, cureSYNGAP1.org/unlock
Why now? UNLOCK It’s giving season. Count our blessings and share what we have. CS1 has moved mountains this year: Staff, ProMMiS, etc. But we are just starting…
Every single family should give and should solicit their friends. Yes, it’s a tough time. Yes, people have other causes. No (most of) your friends don’t have a SynGAPian.
Miss 100% of the shots you don’t take. And remember, donors learn about what they give to, so even small donations cause huge changes in awareness.
Go to our Champions page: https://curesyngap1.org/champions-of-hope/
Tony, Myla, Hattie, Jansen, Kai, Sophia, Kaylie, Gracie are at $50k+. Eight families. It’s only five at $100k+. I think we can do better. I also think we should have more participation at every level, we can’t lean on a handful of families to carry this organization.
These families get something key: CURE SYNGAP1 is in it for the long run, unlike EVERYONE ELSE you are supporting. Great that you are doing schools, horses, girl scouts, etc, but the only people asking you for money right now that are going to be fighting for your kid in 5, 10, or 50 years, is CURE SYNGAP1. The only group who won’t kick your family/loved one out of our community when your SynGAPian bites one of our staff or elopes from a meeting across streets. Also us. The people who understand SYNGAP1 the best. Right here.
Technicals, we could not make this easier!
Take 5 minutes to build your own fundraiser or simply email friends/family/co-workers/church associates/other kids’ sports team parents/etc. It’s uncomfortable but essential.
It’s so darn easy to give –
💻 ONLINE @ CURESYNGAP1.ORG/UNLOCK Use Credit Card, PayPal, Venmo, Google & Apple
📱 PHONE – Text UNLOCK to 71777, then follow the instructions.
📬 MAIL A CHECK CURE SYNGAP1, PO Box 601119, Los Angeles, CA 90060-1119
Two more questions:
?1: Aren’t we done now with CAMP4? No. Three reasons: Clock, Count, unknowns.
Clinical research. Behavioral interventions. Optimal medications. Missense research. Patient discovery. Drug repurposing. Family support. Global coordination.
?2: Our name is a demand: CURE SYNGAP1, and we are not there yet. SRF suggested that funding science was enough, boy were we wrong.
We need patients to be Support. Educate. Activate. Coordinate. I discussed the many ways a PAG matters in #S10e181. (I missed data & should have clinical separate, will redo.) https://curesyngap1.org/podcasts/syngap10/patient-advocacy-groups-matter-party-friday-syngap1conf-soon-elopement-s10e181/
Every single family needs to help us raise funds. Every single one.
SOCIALS
4,426 LinkedIn. https://www.linkedin.com/company/curesyngap1/
1,480 YouTube. https://www.youtube.com/cureSYNGAP1
11k Twitter https://x.com/cureSYNGAP1
45k Insta https://www.instagram.com/curesyngap1/
$CAMP stock is at $4.25 on 7 Nov. ‘‘25 https://www.google.com/finance/beta/quote/CAMP:NASDAQ
Episode 188 of #Syngap10 #CureSYNGAP1
Below is a transcript from the video:
Mike Graglia
Hello, Syngap land. My name is Michael Graglia. This is episode 188. The Cure SYNGAP1 podcast. Today is Sunday, November 9th, year 2025, 46th week of the year. I want to talk about one thing today. One thing. Unlock Their Tomorrow. That is the name of our year-end fundraising campaign, Unlock Their Tomorrow. Why did we pick Unlock There Tomorrow? Did just ChatGPT told us to do that? No, we actually had a huge debate about this. There are some crazy names floating around. But I got to tell you, unlock their tomorrow is based on the insight that our kids are in there. They’re beautiful souls and those beautiful, healthy bodies are stuck with locked up brains and they’ve got so much aggression and fury and frustration and seizures that we can’t connect with our beautiful children and we need to unlock their tomorrow by helping address this disease with better medicines, better interventions, and get our kids back, right? As your kids get older, it feels like they go more and more farther away, and we want to unlock their tomorrow. We want our children back. We want to cure Syngap1. Why are we doing this campaign now? Well, it’s November 9th, guys. It’s the end of the year. Frankly, we’re about two weeks behind. I’m about two weeks behind. So we need to kick off this campaign with a fury. And this is the time of year when people are counting their blessings and people write their checks. They know where they sit for the year, what they can afford to spend, and they give. So this is when, Cure Syngap1 goes to every single family, and we ask you to go to everybody you know and raise money for Cure Syngap1. We have done a lot this year. We’ve built up the staff. We have expanded ProMMis. We’ve done amazing science grants. I think I’ve got multiple press releases I still need to sign off on, but we’re just… Starting guys. I want every single family to give— not only to give, but also to solicit your friends. I know it’s a tough time. I realize that there’s a lot of confusing things happening and the economy is a little uncertain. I get all of that. I also understand that your friends have other causes and that your friends, most of them, don’t have a Syngapian. But I still want you to give… and I still want you to ask all your friends to give. Why? Well, first of all, you missed 100% of the shots you don’t take, right? You don’t know who is just waiting for someone to ask them for a donation. I know that might sound crazy, but it’s actually not. It doesn’t hurt to ask. But also remember, donors don’t just write checks blindly to whoever you tell them to. They say, ‘Well, tell me about that.’ Why would I give to this? What do they do? So even if it’s a small donation, the impact on their awareness of this disease can be huge. And that alone really helps you because then you’re going to your friends, you’re saying, ‘Hey, my kid has this terrible disease and it’s curable.’ and there’s this organization working on it, and I want you to help support them because they’re doing great work. Then they say, ‘Wait, your kids? What tell me about the disease? Tell me about the cure? Tell me about the science?’ That is a great opportunity to enlist friends into this cause with us. I want you to go to the Champions of Hope page, guys. I want you to go to our website, type ‘Champions of Hope,’ and this is where we list donations by kid. And then, if I just look at the families who have given—$50,000, given or raised, I should say, given or raised—$50,000 or more for a given kid. Because basically, it’s each donor who’s given a certain amount of money. And it’s the kid, over to aggregate, and it’s the kid that they donated for. And I just look at all the kids’ names from the top to $50,000 plus. It’s Tony. It’s Myla, it’s Hattie, it’s Jansen, it’s Kai, it’s Sophia, it’s Kylie, and it’s Gracie in Australia, right? Eight kids. Eight kids. And I realize a lot more than eight families have given. And there’s a lot of people at the 10,000 and 5,000, 1,000 level. And I’m grateful for all of them. But people, I think, get distracted by the families who are doing these big fundraisers like Suzanne. Suzanne Jones and her incredible fundraisers, like they’re like, oh, Suzanne’s got this. No, guys, we can’t count on a handful of families to carry this organization, right? We have to all lean in and raise what we can because this organization is just getting started and we need to get as effective, as efficient, and as large as possible. To help all these families with Syngap1. I do think these families understand something that everyone else might have missed, so I’m going to spell this out for you. Cure Syngap1 is here for the long run, unlike anybody else you could give a check to right now. I’m glad you’re supporting schools, horses, Girl Scouts, Boy Scouts, whatever the thing you’re supporting, church, whatever, great. Supporting all those things. But the only people asking you for money right now that are still going to be fighting, understanding, and fighting for your kid in 5, 10, 50 years is Cure Syngap1, right? Take it from me. Tony had a great school experience last year. Wonderful non-public school. Ashley and I were so happy. We gave them a nice big donation this year. Tony had a med change. Tony got dysregulated. Tony beat up staff for a couple of weeks and they beat him out. Bye-bye. Thanks for your money. Thanks for your support. Tony’s too hard. Bye-bye. And now Tony’s been home for over a month, almost two months. Thanks for nothing, Helix. Okay? Schools, preschools, public schools. When your kids get too hard, they kick your kid out. Some horse places. Oh, I’m sorry. He kicked an instructor. It’s not safe. He’s mean to other kids. Buh-bye. Buh-bye. Buh-bye. Cure SynGap1 will not kick you out of the community or stop working to find a cure for your kid just because your kid punches me in the face. I get punched in the face by a Syngapian all the time. Totally cool with it. And I understand they’re not bad kids. It’s their illness. Cure Syngap1 is not going to give up on your family or your kid, no matter what. But everyone else who people are supporting right now have this much patience for behaviors and challenges. And as your kid gets bigger and older and stronger, the behaviors and the challenges are going to get worse. So please understand that the people who have the most sympathy and empathy for Syngap1, the best understanding for Syngap1, and the ones who are going to fight for your child for the rest of… your life and theirs is Cure SynGap1. And that’s one of the reasons you should support us. Let me just talk about the tentacles for a hot minute. It’s super important. We could not have made this easier. We’re working with a great new platform right now. It takes five minutes to build your own fundraiser. You go in, you click, make a fundraiser, boom, boom, boom, upload a picture, and then you can send an email to friends, family, coworkers, church associates, kids’ sports teams, whatever. Yes, it’s uncomfortable, but it’s essential to give people a chance to support our work. You can donate online, at curesyngap1.org/unlock. We take credit card, PayPal, Venmo, Google Pay, Apple Pay, all the pays. You can actually, with your phone, you can just text unlock, unlock to 71777, 71777. And guess what? You’ll get a link and you’ll be able to donate. You can also mail a check the old-fashioned way. Cure SynGap1, P. O. Box 515734. Like, anyone’s going to remember that in L. A., California, 90051. That’s our special P.O. Box just for donations. You send it there. It goes right into the bank. We get a copy. It’s beautiful. But we have built an entire system here to make it so easy for anyone and everyone to donate. And I really encourage you to make a donation. Real quick, I got three minutes left. I just want to talk about two things. People say, well, wait, Mike, why are we working so hard? I mean, CAMP4 is going to clinical trial. Aren’t we done? No, there’s three reasons. Count, clock, and unknowns. The count… A clinical trial phase one, two is going to have, I don’t know, 50 or less patients probably. I don’t know the numbers worldwide, worldwide. So let’s assume it’s 50, which might be high. That will be 12 patients in the US. And after phase one, two is done, pending a miracle, like everyone gets better and we can run to the FDA, then we have to go to phase three, maybe 100, maybe 200. I have no idea. What is that in the US? 25, 50, 75 patients. How many do we have in the US right now? 500. So. And that’s going to be in a year or two or three. So without putting too fine a point on it, CAMP4, bringing an ASO to trial is a huge milestone. Gets us to a brighter future. But in the short run, guys, it does not solve our problem. That’s clock and count. And there’s also unknowns, right? We still don’t know enough about these kids. We still don’t know about optimal behavioral inventions. We still don’t know what existing meds can and should be optimized or combined. The missense patients don’t qualify for an ASO. We got to work on the missense patients. We don’t know how to find more patients. Where are all Syngapian’s hiding. We haven’t done enough drug repurposing work. We found drugs to repurpose, but we now need to run some trials on them. How could we better support families? How can we coordinate globally? There’s all of this work that we still need to do that the CAMP4 ASO does not solve. I love CAMP4. We’re supportive of CAMP4. We want to see them be valiantly successful. But CAMP4 bringing an ASO to market does not mean it’s the end. It’s not the beginning of the end. It’s the end of the beginning. Beginning and now we have to double down. The other question I get a lot when I start talking about fundraising and raising funds for Cure Syngap1, people are like, Mike, why do we call it Cure Syngap1? Syngap Research Fund was cool. Everybody knew Syngap Research Fund. Why did you change it? Syngap Research Fund started when Ashley and I thought that we just needed to fund science. And once we funded science and created an ASO, everything would take care of itself. Turns out that’s not true. Turns out you need a patient advocacy group to organize patients, to coordinate clinicians and scientists, to build assets and share resources, to aggregate data. I talked a lot about this in episode 181. Go listen to episode 181. But Cure Syngap1, guys, is our name because we are bigger than a fund. We are a patient advocacy group with one demand, Cure Syngap1. And when we put it like that, people get it. So I am saying it to you. We need to cure SYNGAP1. The way we do that is together. The way we do that is under one banner of Cure SYNGAP1. And the way we do that is with cold, hard cash, people. Cold, hard cash, grants, salary, support for families, all the things. It takes money. So please, Curesyngap1.org/unlock. Help us raise funds and change the future for children with Syngap1, mine and yours. Thanks so much for your support this year. It’s November 9th. We have about six weeks left.