Purpose can come from anywhere.
We often think of purpose as something that comes from something you love, but more often than not, purpose comes from the hard things in life. For example, today we are talking with Mike Graglia, who found a purpose through the struggle of being a child’s parent with SYNGAP1. A rare disease where a specific protein is not created that is essential for nerve growth. It is so rare that it wasn’t recognized in humans until 2009.
Mike knew that information would be the key to advancing his and the medical community’s understanding of this disease. So he started the non-profit SynGAP Research Fund to advance the research and treatments available for people with SynGAP1. His podcast, the SYNGAP10, is that purpose coming to life in a big way by providing listeners with the latest news each week in the community.
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Hi and welcome to Cosbas. I’m your host, Mathew Passy here at Causepods.
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We’re going to take you out to the West Coast. We are joined by Mike Garrala. He is the host and creator of the Singhapp Ten podcast. If you’re trying to find that, I mean, there’s going to be a link here in the show notes, and it calls Boss. Org where you’re looking for S-Y-N-G-A-P. The number ten. And this is a podcast. It’s a ten minute weekly briefing for members of the Singhapp One rare disease community. Mike, thank you so much for joining us here on Call spots today.
00:01:05.190 – Speaker 1
Thanks so much for having me, Mathew.
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Tell us what is Singapp One. And why is this such an important cause to you?
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Singapp One is a terrible disease, and it’s important to me because my son has it. So there’s only 250 kids in America that have this disease, 880 in the world. And my little seven year old boy who is otherwise perfect is missing 50% of what he needs of this protein. And as a result, he has epilepsy, intellectual disability, sleep delay, hypatonia, autism and other terrible things. And so when he was diagnosed at the age of four, it was devastating for my wife and I, and we realized that there wasn’t an organization that existed in America to raise funds and accelerate the science because the age we live in today, it’s not crazy to think we could inject something into Tony that would help his brain work better and change the course of his life.
00:02:01.650 – Speaker 1
And that organization didn’t exist. So we created it. Susan Gap. One is a terrible disease. It’s not inherited. It is a genetic disease. So SYNGAPone is the gene that it happens on. But it doesn’t mean that he got it from mom or dad when we were created, we all have typos. Most of those typos happened in relevant places. I had a typo that gave me a big nose, not a big deal. My son had a typo that caused him to have a deficiency of SynCap. One big deal.
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But there are therapies available for genetic diseases today. And what the Synga Research Fund, which is the organization we created.
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Exists to do is to accelerate those therapies how did you get this diagnosed? Being such a rare disease with only 200 plus cases around, like, how long did it take to go from something is definitely wrong to having an answer.
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Too long as a volunteer, I now run the organization Day to Day, and I see a couple of newly diagnosed families every week. Things have changed a lot just in three years, but it always takes too long to get diagnosed. So in Tony’s case, our kids are always a little slow, but it’s not obvious that something’s really wrong until around two or three when they’re just not talking or not talking enough. And then sometime between three and four, on average, they start having seizures. Very mild seizures at first, so they’re easy to miss.
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But the way most of our kids get diagnosed is seizures lead to neurologists. And then you have people who understand that. Nowadays 40% of kids with seizures can be explained through genetic testing and people who don’t accept that. And luckily, we had a neurologist who said, no, this is a kid having seizures. This is not okay. Let’s make sure that we’ve checked for genetic causes. And luckily, we’re seeing excellent team at Stanford, and they found the cause of Tony’s epilepsy. So anybody out there listening with a child who’s having seizures, if you haven’t had genetic testing, get genetic testing.
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Is that a good lesson for everybody out there? It could be nothing. But it could be something that is extremely rare or different than most doctors wouldn’t even know to look for. So go out there and seek some extra assistance where you can before we get into the podcast itself. You said you started this organizational on your own. What were some of the big challenges in creating a nonprofit for medical research and support?
00:04:25.870 – Speaker 1
Time and money? These things. It took time and money. I mean, you got to be like, okay, how do we do this? Well, you can sort of fake it or you can hire a lawyer. And we were in a hurry because what we understood quickly when our son was diagnosed, we did the rounds. We talked to a lot of researchers and clinicians, and we realized three things. Number one, there is a way to go after Cin gap. I won’t get too much into the science, but there are different sort of types of genetic diseases.
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And what’s nice about Cngap is we all have two copies of every gene, one from mom, one from dad and in SynGAP. One of those copies is busted. But one of them is good. So basically, the therapeutic approach that will help the most kids is to find a way to make the good copy work harder and fill the gap from the bad copy. I’m painting in broad strokes here. But so lesson one, this is solvable. Lesson two. People do this. I had no idea. Four years ago, I had no idea.
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People apparently quit their jobs and raise money and find scientists who care and give money to these scientists to make them work harder.
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So we did it. And lesson three, there are people you can learn from. So there’s an incredible organization out there called Global Genes, who really Nicole Boise was the head of that. And Nicole just gave us so much guidance and help, but really time and money. So you got to create you got to go through all these rigmaroles. You best to hire a lawyer, and then you got to set up a website. But the big lesson is you’ve got to find other parents and you’ve got to bring them into the team because most people, when they get this diagnosis myself included, to be clear, like curl up into a ball and cry.
00:06:02.510 – Speaker 1
Your kids might never speak. Your kid’s not going to College, your kid’s going to be in your home or a home for the rest of their life, et cetera. You’ve got to get people out of that place of despair to a place of hope, which is we can do something about this. And there’s all the legal stuff and all the Hoops you have to jump through. But really, that’s the hardest part is getting yourself from despair to hope and then getting other parents from despair to hope and then building a team and working to change the future.
00:06:34.170 – Speaker 2
What has been the rate of success or the rate of new changes in treatments since you started this and started working with researchers to work out better treatments?
00:06:51.090 – Speaker 1
It’s been incredibly fast. Honestly, when we were diagnosed, we were talking, if you look at our scientific advisory board, these are the researchers who help us think about what to do. We’ve been very lucky in who we work with and what they told us three years ago. We could hope for happened in a year and a half. So the speed of science right now is really remarkable. And at this moment, as I’m sitting here talking to you, I can think in my head of at least three different labs that are working on therapies to make that good copy work harder.
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They’re called Asos, and I can think of a couple of biotechnology, large Pharma companies that are also paying attention to sync app one. So it’s looking at all these players and saying, what do you need? Some labs need a postdoc. Everybody needs patient derived cells. What this means is we basically have a program right now where parents volunteer their kids blood, and we take that blood and we grow it into stem cells. And we keep those stem cells in a central repository. And any researcher who wants them, any company who wants, we’re, like, take the stem cells, please work on them.
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And what we’re doing is where we’ve identified this sort of step one of research get patient derived cell lines, and we just built them and said, Anyone who wants them, take them. No problem, because what this is doing is taking months off everyone’s timeline and helping people test their various approaches on patient genetic material faster.
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So that’s just one example. But we are at this point hopeful that there will be some kind of therapy ready for clinical trials in a year or two, maybe three. But then clinical trials are where it all falls apart. So at this point, SRF is raising money and working hard to derisk those clinical trials to figure out what it’s going to take to do a trial and make sure that as much pre work has been done as possible. The clock is ticking, right. My kid is seven.
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He’s getting bigger, he’s getting stronger. He’s getting more difficult. So I’m literally thinking.
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How much faster can we go?
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This is very real for everyone who’s got a sick kid after creating this organization and making what sounds like some really incredible progress along the way, why then create a podcast?
00:08:57.270 – Speaker 1
I’m so excited to answer this question. I was thinking about this this morning. So we created this organization, and we wrote a bunch of blogs, and they were really beautiful. Blogs. Edited them, we cited them, we referenced them amazing blogs. No one has time to read these blogs. And then we’ve had a really brilliant scientists come to our web page. And if you go to our web page, it’s like, 36 webinars. If you’re a Med student or a genetic student, you’re going to love this stuff. Parents, they watch some of them, they follow some of them.
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They can’t keep track. And I sat back six months ago now, and I was like, how and I started getting on the phone with newly diagnosed parents, and I had the same conversation again and again and again. And I answered the same questions again and again and again. And I would send people links to the same blogs again and again and again. I’m like, this isn’t working. And then the next week, another family was diagnosed. And the next week, two more families were diagnosed. And I’m like, how do I keep up?
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So that’s point one, there was a huge need for communicating the same material again and again. Number two, the answer changes over time.
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The thing I would say today is different than what I would say three months ago because so much is happening. Number three, you got to remember my audience. These are people with very sick children, autism, epilepsy, sleep disorder, hypotonia, blah, blah, blah, blah, blah. They see so many doctors. It’s ridiculous. The time they’re not spending, taking care of their kids, changing diapers, seeing doctors, they’re fighting with insurance. And by the way, someone’s got to pay the bills. And they got to take care of themselves. Rare disease.
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Parents of very sick children have no time. They’re certainly not going to curl up with a tablet and read my beautiful blog posts.
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So insight. One, my parents are time deprived and they’re exhausted, right? They don’t have time to read these blogs. Point number two, it’s very lonely. Being a rare disease parent, you can’t take your kid to the park if your kid’s going to do something cause of scene.
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And if your kid has a sleep disorder, you’re tired during the day. And then your kid wakes you up at 02:00 a.m. And you spend 2 hours getting them back to bed. And it’s 04:00 a.m.. And you can’t sleep. Or if you’re taking your kids for a lot of appointments, you’re sitting in the waiting room for half an hour while they do their precious therapy. And so the insight is that my families are exhausted, scattered, fragmented. It’s a very lonely existence.
00:11:09.030 – Speaker 1
What if I could just have timely updates appear on their phone and go right into their ears? They don’t even have to read it. If you think about the rare disease use case, a brief weekly podcast is like magic. And then it gets better because as we just talked about Mathew, things are happening so fast, right. There’s so much news, there’s so much information, there’s so many papers, there’s so much work that we’re doing that this week I have more news. And next week I’m going to have more news.
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And in three weeks, guess what just happened. That thing I talked about. It’s real. It’s a perfect medium because I can go right to parents and give them news they need. And these are people who need this information. Do they need this information because I want them to have it, or do they need it because they need it. They need it because they need it. They have a sick child. And if you remember my point before, I used to think my job was to raise money, and then I used to think my job was to find parents.
00:12:03.690 – Speaker 1
Now I think of my job as I have a lot of jobs. But the most important work I do is to get people from despair to hope. And the way you get people from despair to the way you get people from. Oh, my God, my child is sick. They’re going to be sick for the rest of their life. My life is over. It’s a disaster to maybe things can get better is you give them information, you tell them the truth, you bring them along. And the first time you have that conversation, they’re like it’s too much.
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But the fourth or the fifth and the 6th time you have that information, it starts to sink in. And so the insight was a I need to communicate better. And I need to get messages to parents where they are. And that’s what was the Genesis in Gap Ten. And then what I’ve learned over time is it’s an incredibly powerful tool because it takes less energy to listen than it does to engage. So by the time someone’s called me, they’re ready to hear something. But there’s a lot of parents I’ve realized with Cin Gap Ten where they discover it and they listen for a couple of months, and then they call me.
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So it’s just been magic. And anyone who’s dealing with a population like mine, people who are sick or taking care of sick people, people who are stressed out, people who don’t have time just put the message out there. It’s like a Lighthouse just every week Bing, Bing, Bing. And it’s been so wonderfully effective. So I just started it basically as a living FAQ. I’m like, go and listen to the podcast, tune in. You can stay current. And what I realized is it’s much more powerful than that.
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It’s like a lifeline and people are listening to it. I just had a family last week. I’m 30 episodes in right now, plus or minus, and one family got diagnosed, and I told her about the podcast, and she was like, no, no. My husband and I have listened to every episode. You spent 5 hours listening to me, and you’re still talking to me. And she’s like, yeah, she’s like, we have so many questions, and it was awesome, right? That’s like, 5 hours of background that they come in with, and they’re already there.
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I’ve already brought them to a place where we can now have a discussion. So sorry I’m rambling on this, but I really do think that this idea of a ten minute briefing to your to generalize this a ten minute weekly briefing to your stakeholders is an incredible use case for podcasts, especially when your stakeholders have no time and people are slipping me in when they do laundry when they drive to appointments.
00:14:34.630 – Speaker 2
It’s been awesome given the response. Is there any thought of expanding the podcast into other content types other than just the ten minute update? Not that I think this is a great use case, and I agree with you wholeheartedly that what you’re doing is great for not only folks who are trying to inform people in their niche community, but also just something that everybody’s like, oh, wait, that works.
00:14:55.570 – Speaker 2
Maybe we should be doing the same thing, but any thoughts of expanding the kind of content you put into this feed as a result of the success that you’ve had.
00:15:03.430 – Speaker 1
We’Re debating that right now. I’d like to do interviews with other parents. I’d like to do interviews with clinicians, but I kind of have accidentally, like, I don’t claim to have engineered this. I just got lucky. This was an experiment and it worked. But I’m thinking about doing, like, parallel podcasts, right? Like having another family, having another host in our organization do interviews with families and then have another one, do interviews with clinicians because I used to think of as a podcast as a TV show like, tune in this week and hear what’s going on.
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And what I’ve realized is actually a living history and a bunch of evergreen content that people can go back to in our use case.
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So it’s like I kind of want to keep the streams pure, like you want ten minutes a week of updates. Go here. You want to meet other family members. Here’s a different family member interviewing other families. You want to learn about science. Go here. It’s an incredibly potent medium if you’re trying to educate a population, but you’re the pro. If you have an opinion, let me know.
00:16:07.090 – Speaker 2
Mostly, this is a way for folks like yourself to get more people aware of what you’re doing, more people aware of your efforts, but also for others who have a cause to learn how to use this medium to the best of its ability. And it seems like you have tapped into one of those use cases that most people would overlook and be like, Nobody really wants a ten minute update. For me, that sounds boring. But what you’re telling me is no, that’s exactly what everybody has wanted.
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And it has helped in a lot of ways. So we are all learning from you today. So please, like, it was a happy accident.
00:16:37.570 – Speaker 1
But it has been my experience and within the rare disease community. I just did a panel discussion last week at a global genes conference, and I basically said this, I was like, go start a podcast. Best case scenario. You have my experience and it serves your community. Worst case scenario, it’s a disaster, and you just delete it. But the cost of setting up a podcast on anchor or whatever is pretty low, actually, zero. And you should probably buy a microphone. But the benefit of connecting with your community, because if you think about what I’m doing, I’m out here working hard.
00:17:13.810 – Speaker 1
I’m talking to industry. I’m talking to the clinicians. I’m doing all these different things on behalf of all these parents, and they don’t know who I am. And then one day and yesterday, there was a mom diagnosed yesterday. Last week. She had no idea who I was, and she didn’t care. Yesterday, she realized that the reason her little girl is sick and has been sick for ten years is through this gene. And she’s suddenly like, who is this Mike guy? What is he doing on my behalf?
00:17:37.570 – Speaker 1
Like, I got to figure this guy out. That’s a totally reasonable thing for any parent to say.
00:17:44.830 – Speaker 1
If you have been appointed to lead an organization or if you’ve appointed yourself kind of like I did, you still need to earn the respect and the trust of your stakeholders by communicating with them. And that communication takes a huge amount of time. But a podcast is a really effective way to be transparent and just let people know a little bit about human psychology. When I was starting this, I was like, I’m just going to do a video podcast. Keep it simple. What someone said to me, they said, you know, Mike, you’ve got a lot of people out there and you need to build their trust.
00:18:16.990 – Speaker 1
You need them to get to know you. They’re like, consider doing a video podcast. And so I do a video podcast, right? Sin Gap Ten is actually two streams. I do Cincap Ten via Pod Bean, which goes to Apple. So my Apple podcast is a video podcast that also being posted on everything.
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Facebook, Twitter, whatever. And then I take the same MP four file and I reprocess it to MP three, and I drop it through anchor because Google won’t take video. So even though I have one SynCap Ten brand, I’ve actually got two streams out there, which makes analytics a bit of a pain. But what it ensures is that if you type Cingap Ten into anything, you find my update.
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And so that was a bit of a learning. But the people who are connecting on video are seeing my face and they’re realizing that I’m really in this for the kids and that serves the organization and the community in the long run, because this is not going to get simpler.
00:19:14.050 – Speaker 1
Once we have a therapy, we’re going to start talking about clinical trials and people are going to have a lot of valid concerns and questions. And what do you mean we’re going to have to stick a needle in my kid’s spinal column because we need to get the medicine to the brain, right? This isn’t a pill you take. This isn’t something you shoot up. This isn’t something you put in your arm. We’re going to have to literally take kids stick a needle in their spinal column and let it percolate up to the brain.
00:19:34.690 – Speaker 1
So the building trust and letting people see your face and letting people connect with you on this really human level is again a very powerful and I think potentially underrated aspect of these podcasts or video podcasts.
00:19:56.050 – Speaker 2
Well, once again, it is the Singhapp Ten S-Y-N-G-A-P. Ten podcast. You can learn more about at the Singapresearchfund. Org or we will have links obviously in the show notes and at the podcast and on Cospas.
00:20:13.690 – Speaker 2
And please please also go check out Singaporesearchfond. Org there. You can donate and support the great work that Mike and the other families are doing to try and come up with effective treatments for children who are dealing with Singapore and also possibly volunteer your time or other efforts to help them out. And frankly, if you are thinking about a way to update your community about what is going on, the model that Mike has created here for Singapp One is pretty remarkable. And so I think there’s definitely a lesson to be learned from them.
00:20:47.290 – Speaker 2
Mike, thank you so much for coming on calls about today, telling us about your show and for giving us a good lesson on how to use this medium more effectively. And thank you for joining us.
00:20:58.810 – Speaker 1
And my pleasure. Thank you for every bit of awareness helps.
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So I appreciate you talking to us thanks for listening to this episode of Cause Pods. If you’ve been inspired by the work of our guests, please check out the show notes to this episode in your podcasting app or at costpods.
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There you will find links to their show, their website, their podcast links on Apple.
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Google Spotify, as well as a link to support the charity that they highlighted here in this episode.
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You will also find at causepods. Org a way to subscribe to this show on your favorite podcasting app.
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How to sign up to be a guest on this show and a link to our Facebook group.
00:21:36.070 – Speaker 2
Which is going to have special resources just for the folks who are podcasting for a good Cause. And I can tell you right now we’ve got one great deal from our friends at Pod page, but you’re only going to learn about it and get that special deal. If you are a member of the Facebook group for Cospot and before I go, I should say thank you. In particular, the show is edited and produced by Ben Killoy of the Military Veteran Dad’s Podcast.
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And what a great job he has done and all this is made possible because of the great support that I receive from Shannon Rojas here at the Podcast consultant. Com.
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Once again, if you want to learn more, go to Causepods.
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00:22:10.030 – Speaker 2
Thank you so much and we will see you next time on cospons.