CureSYNGAP1
CureSYNGAP1
Donate

Becky Quick launches CNBC Cures, Finding Your Voice & Key Talking Points for SRD! #S10e194

Friday, January 9, 2026 – Week 2

Big news in SYNGAP-land
Becky Quick and Matt Quayle have a beautiful Syngapian named Kaylie & they are launching CNBC Cures!

It’s important for us all to remember that it can take time to find our voice. And then use it.

Speaking of using our voice, what can you say?
We worked yesterday on Key Talking points which will live here and I will talk about them in the next episode. https://docs.google.com/document/d/1lXaDQEVwF1K_yAU-RicaJibxb8xoJtldSvnVgopwu00/edit?usp=sharing

First paper of 2026, Challenges of Caregiving in SYNGAP1, STXBP1, and TSC.
https://pubmed.ncbi.nlm.nih.gov/41405416/

PUBMED is at 1 for the year. https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2026&timeline=expanded&sort=date

SOCIAL MATTERS
4,546 LinkedIn. https://www.linkedin.com/company/cureSYNGAP1/
1,500 YouTube. https://www.youtube.com/@cureSYNGAP1
11.2k Twitter https://twitter.com/cureSYNGAP1
45k Insta https://www.instagram.com/cureSYNGAP1/

$CAMP stock is at $6.20 on 8 Jan. ‘26 https://www.google.com/finance/beta/quote/CAMP:NASDAQ

Like and subscribe to this podcast wherever you listen. https://curesyngap1.org/podcasts/syngap10/
Episode 194 of #Syngap10 #CureSYNGAP1 #Podcast

Below is a transcript from the video:

Mike Graglia

Hello, Syngap Land. My name is Mike Graglia. This is episode 194 of the CURE SYNGAP1 podcast. Today is Friday, January 9th, week two of the year 2026. The big news in Syngap Land happened yesterday. Becky Quick, anchor of CNBC’s Squawk Box, and her husband, Matthew Quayle, went public with the diagnosis of their daughter, Kylie’s SYNGAP1 diagnosis. And they announced that and talked about it in both a live segment on TV, as well as in a video podcast that they released yesterday. Also, they announced CNBC Cures, which will be an effort by CNBC to raise awareness of rare disease more broadly, right? This is tremendous, tremendous stuff, and I’m really excited about it. I got way too many messages yesterday saying, ‘Have you seen this?’ For the record, if something has SYNGAP1 in it and it’s in national media, I get notifications. Five other people have already asked me if I’ve seen it. Just so you know, ‘Um,’ do you know her? Yes, I know her. Have you talked to her? Yes, we have spoken. I have been talking to her for years, actually. Um, you know, when someone gets diagnosed, they normally reach out to the fund, and we say, ‘Do you want to do something?’ Do you want to do a fundraiser? Do you want to be involved? And some people say, ‘No, I just want to stay private.’ And we respect their privacy. And we give them the time they need because everyone needs time to process this and to get used to it and to figure out how they’re going to integrate this diagnosis into their life. Right. Are they going to talk about it at work? Are they going to talk about it in their family? Are they going to talk about it? There’s just so many things. And when you have somebody like Becky Quick, who is a national figure on TV every day, getting, you know. Dealing with some of the most powerful people in finance, but also getting randos on ex-sender sending her weird messages. Like she has to decide, do I really want to talk about my disabled child? And, um, and I’m not making stuff up there. She talks about exactly that. In the TV segment and then in the video podcast, and I really encourage you to watch both. As I sit and as I think about it, um, I want to focus on just three things. First, it’s wonderful to have more awareness about SYNGAP1. I am certain that somebody watched that and sent it to their spouse and said, ‘Wow, that kind of sounds like our kid.’ Hopefully, that couple um reaches out to their doctor their neurologist and pushes for genetic testing. Everybody should get genetic testing. If you had genetic testing a while ago, you should still reach out to your doctor and say, ‘Let’s reevaluate that because every year the knowledge base gets better. The second thing I really liked is there’s one quote from each Becky and Matt that I want to emphasize. Becky said it really succinctly. There is no mission without money. There is no mission without money. I am going to adopt that. I’m going to put it into all my speeches. There is no mission without money. We all as SYNGAP1 families need to donate to CURE SYNGAP1. Tell our friends and family to donate to CURE SYNGAP1 and raise funds for CURE SYNGAP1. There is only one patient advocacy group in the United States of America. And we are also the largest patient advocacy group in the world. That is fighting exclusively for SYNGAP1 patients, and we need… We need… all the help we can get because we have to. Do many things, which I’ll talk about in another episode. But there is no mission without money. I like that. The other thing that Matt said. Classic dad line, all the dads sort of hit this point at some point. She has reset our whole life plan. You know, dads like to have a plan. One day I’m going to be gone, and is Kylie going to be okay? And the way I say that is, our kids are going to outlive us. What’s going to happen? And that’s part of my talking point for CURE SYNGAP1. We need to build this organization so that it is there to advocate for and support our patients after we are gone. Anyway, lots of lots of good stuff. Please digest it if you haven’t already heard about it. The SYNGAP1 social media ecosystem has been pretty full of this yesterday, but check it out. So there’s a LinkedIn post that I always like to share. And then there’s also a short link for our website: curesyngap1.org/kaylee. And that’s got all the things you need to know. The most important thing I want to emphasize about Matt and Becky here is that they were diagnosed six years ago, their daughter’s nine, and they just went public now. I want to be very clear here. I’m not saying that, in any way. In a negative way. I’m saying that in a… recognizing reality as it is, way, right? It takes time. It takes real time for people to digest the diagnosis, to accept the diagnosis, and to find the words to talk about it. And if you’re a national figure on national television, you really need to be thoughtful about what you’re going to say and how you’re going to say it and when you’re going to say it. So… I think. It’s just really telling to me that that was the number. I feel like, right when our Syngapians turned 8, 9, 10, is when the reality just becomes overwhelming and the parents kind of either crumble or step into this new role. That’s what I’m starting to see. That’s certainly what I’m living with Tony, who’s 11 right now. But all of us, in my opinion, all of us need to do that. All of us need to find our voice and step forward and talk about our kids and talk about this disease and rally support and raise awareness. I want to urge all of you to just reflect yourselves. Where are you in your journey about talking about SYNGAP1? How could you use your voice? And when are you going to do that? Now, I have to admit. When I was watching Matt and Becky talking about all these things. I was like, ‘Oh, that’s so good. ‘Oh, there’s no mission without money. Oh, this is excellent. Oh, I got to write that down.’ There were a couple of things I was like, ‘Oh, I wish they’d said that.’ Why didn’t they talk about epilepsy? You know, because I’m always analyzing. And I was sitting there, I was like, ‘Gosh, Mike, how can you be sitting there? Doing this in your head if you haven’t put out the talking points, if you haven’t said to the world, ‘Hey guys, here’s how you talk about SYNGAP1.’ And it’s especially, and I was like, why do I care about this? I had a lot of conversations with myself today. And I’ll tell you why. I’ll tell you why I care about it. Right now, CAMP4 and others are talking to regulators in the United States, in the UK, in Europe about a clinical trial. And we are working on, saying the same thing to all the regulators and getting all the regulators to approve the same protocol. This is a super important thing I’m going to talk about later, global regulatory harmonization. Super interesting. Point is… We can’t get the regulators on the same page if we, the patient community, aren’t using the same words to talk about the same disease. So… I think it’s really important to have a set of talking points that we look at and we say, ‘I like that, Mike.’ ‘I don’t like that.’ You left this out. You didn’t say this. And then when I… Say to siblings in high school and college, go talk about Syngap. When I say to parents, please go raise money in your church, in your community, your company, tell them about Syngap. When I say to parents, ‘Hey, there’s this company down the road from you. Please go talk about Syngap.’ We have to have the same script. So I drafted the script and there’s a bunch of key talking points for SYNGAP1 and the links in the show notes. I’m going to spend the next Syngap episode. Just talking about those talking points. So episode 195 will be Mike, talking about his key talking points. But I just want to let you know, kind of the inspiration of that. Like I realized today. Someone like Becky talking about Syngap to the whole world. We got to make sure our talking points are public and are aligned. And then, as usual, I want to just end this episode with the usual things. PubMed. Where’s PubMed at? You know me. I like to see a new paper come out every week. We’re in week two. I want to see at least two papers. Because last year we had 59 papers. That’s more than one a week. Beginning of the week, year’s almost a little slow. Right now, we have one paper in PubMed, but it is a doozy. Challenges of Caregiving in SYNGAP1, STX, BP1, and TSC. This is a fabulous, fabulous paper. And I want to compliment the authors. And they compare STX and Syngap. TSC you may not have heard of, but it’s a much bigger disease, tubular sclerosis. And I just want to read you the summary talking points. This is the first study to explore the lived experiences of mothers of children with these three rare genetic developmental and epileptic encephalopathies. Using a qualitative approach. Caregiving demands and constant vigilance disrupt all areas of mother’s life. The role of mothers is deeply shaped by structural and gendered expectations, often forcing them to leave work. Leave or reduce paid work. As a dad who left paid work and is a caregiver, but runs a peg on the side. I was kind of like, ‘Hey, why are we only talking about mothers?’ But they make the point. This is normally happens to the mothers and the study was done in Europe. So I’m like, ‘All right, let it go.’ Our findings showed that daily care duties, emotional impact, and role transformations experienced by mothers of children with these diseases. Helping professionals. Identify gaps in care and improve tailored support. It’s a really fabulous paper. It’s behind a paywall, unfortunately, but if you want a copy, send me a note. I can send it to you. Social media matters, guys. It never mattered more. We have to stick together. We have to support each other online. LinkedIn, YouTube, Twitter, Insta, links from the show notes. CAMP4, as you know, is working on SYNGAP1. Their stock closed at $6.20 yesterday. So congratulations to Becky and Matt. Let’s keep going. Let’s build on this momentum. Let’s cure SYNGAP1. It’s going to be an exceptional year. Stay tuned for episode 195, which we’re going to publish right away, where I just walk through my key talking points available in the show notes. Have a wonderful week.