206 – Chris Velona of North Los Angeles, Father of Two, Including a Son With Batten Disease & Founder of Project Sebastian

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Chris Velona: I know this is gonna sound weird to say, but I’m absolutely grateful, grateful that I had this opportunity to be a rare disease family, to be a rare disease dad. It really opened my eyes and actually changed me. You know, I would say that sobriety changed me, but dude, having a rare disease while in sobriety completely changed me even more, to where you have this affinity, this open world view of everything.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org,

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

I’m thrilled to be talking today with Chris Velona of North Los Angeles, the father of two, and founder of the Project Sebastian, a not-for-profit named after his oldest son. Chris, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Chris Velona: Thank you for having me, David. Happy to be here. It’s about time.

David Hirsch: I agree. So you and your former wife Teresa were married for 10 years, and are the proud parents of two boys, Gage, 16, and Sebastian, 18, who was diagnosed with Batten Disease.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Chris Velona: Grew up in San Fernando Valley, inside Los Angeles, California. Born in 1969, September 5^th, hello fellow Virgos, and basically just had a great childhood from what I remember. I am the youngest of four children. There was six of us total, great family. I have two older brothers and one older sister.

David Hirsch: Excellent. So I’m sort of curious to know, what does your dad do for a living?

Chris Velona: Well, before he passed away, which was a year ago last April, he was retired as a businessman. He retired from television and radio for the better part of 40 years in Los Angeles, running such stations as RKO, Channel Nine, and KDOC here in Los Angeles and Orange County.

David Hirsch: So he is a media guy?

Chris Velona: Oh yeah. Oh yeah. He’s one of the reasons, not the ultimate, but one of many reasons why we have localized televised sporting programs. So he was one of those innovators.

David Hirsch: Oh, very interesting. So I’m sort of curious to know, how would you describe your relationship with your dad?

Chris Velona: Oh, he is a great guy. I really miss him. Pretty much laughed every time we talked. Just was a very caring and loving man, but, you know, those Italian’s iron fists. So he really shaped my life. After my, 26 years of being in this world, I got sober, and he was actually one of my mentors in helping me stay sober. He passed away with 40 plus years of sobriety. So yeah, I miss that guy. He was a good dude. Chuck Velona was his name.

David Hirsch: Yeah. Well, thanks for sharing. I’m sort of curious to know if there was an important takeaway or two that comes to mind when you think about your dad, either the role model he was as a father, or something that really impacted you.

Chris Velona: He was always very supportive, but he was very realistic. Like, I told him I wanted to be this actor, and I wanted to be intelligent in film. And this guy who did a lot of stuff in local TV basically would tell you that he hated the business. And so he kept everybody in the family from getting into the business. He firmly hated nepotism.

I would have to say that he was very reality based. I tell him I wanted to be in the business, and he says, “Quit dreaming. Go get a real job. You know, the world needs ditch diggers too, son.” And that was the one thing he…but you know, like any other father, he’s just trying to protect me from the perils of crazy ass dreams like we all have.

And later on when we became friends—because you’re never really supposed to be friends with your father—but I was lucky. I got to be friends with my dad, and we became best friends once I got sober. And he goes, “You know I love you, right?” And I’m like, “Yeah, I know. I love you.”

And he said, “No, no, I’m sorry if I was such a bad father.” And I said, “You weren’t a bad father.” And he says, “Well, I just wanted to protect you and all that stuff.” And I was like, “Yeah, I get it. I get it now because I have two kids.” He says, “Ah, that’s usually what happens. You never really understand until you’re a father yourself.” So, I mean, a great cheerleader, great mentor. He never said, “Don’t.” He just said, “Do your research.”

David Hirsch: Interesting. So you mentioned in a previous conversation that after your dad passed that you were provided with this coin that he had. Which is the “Rule of 62” coin. What’s the backstory on that?

Chris Velona: Well, screw anonymity, I guess. So rule 62 is a reminder. It’s a coin. It says Rule 62, “Don’t take yourself too damn seriously. We’re not a glum lot.” And that’s a daily reminder, you know, for being in recovery, that you’re not as important as you say you are. You know, we are a group mentality. We’re not individualized.

And basically you are to understand that you’re part of a team, and you’re not “ I need all this attention,” and crap like that, because that usually leads to relapse. So we think we’re the most important person in the room. We usually don’t see those guys after a while. But yeah, that was a nice little gift from my father via my oldest brother at his funeral.

David Hirsch: Yeah. Well, thanks for sharing. Very profound. Were there any other father figures—uncles, priests, coaches, anybody like that—that had an influential role in your life?

Chris Velona: You know, I got along with my uncle Jerry, my father’s brother. He was really a cool cat. He’s still around. He’s always playing the drums. So we’re a family of musicians that goes way back to Sinatra. Everybody has a little bit of lineage. Even some of my distant cousins are still playing music today, and I’m quite enjoying them online and stuff like that.

But it was close knit between these three families. It was Uncle Al, there was Uncle Jerry, then there were my brothers. I mean, I really enjoy reminiscing about those men, because we were always at their house either for Sunday dinner, or we were at 4th of July in Simi Valley. And it was a great time being a child in the seventies, to be honest with you.

David Hirsch: Shout out to your uncle Jerry. Out of curiosity, when you finished your education at Arizona State, and you took a BA in broadcasting journalism, where did your career take you?

Chris Velona: It didn’t go very far. Sorry. So we talk about that whole thing,  like I am so popular. I’m so awesome. I am the king. And I came out of college with that mentality. I was gonna be the youngest producer in Hollywood. And I eventually got fired from Warner Brothers and drank up those jobs, and was really into my disease of drinking at that time, and just bouncing around from television show to different production companies.

I was just an idiot. Complete idiot. You know, I did shit I wasn’t supposed to do, and I never listened, and I rarely showed up. And then I wondered why I was fired. It was not a great time. I was having a great time, but, you know, looking back on it, it was embarrassing.

You know, this is just what we do when we’re drunks. We think everything’s fine. I’ll just find another job, couch surfing, getting kicked out of my family’s houses and ruining relationships. And yeah, it wasn’t that great of a time until actually I got sober. Then the real career began.

David Hirsch: So what was that?

Chris Velona: Then I washed cars. I was a car washer. I finally found something that I enjoyed because I could be by myself. Take all of those hobbies that I had learned through my uncles about cleaning cars, and make some money on it. So I had a standalone hand car wash and a detail shop in Montrose, California, and it was great. I was by myself. I got to listen to no one except me, and I made a few bucks.

David Hirsch: That’s fabulous. One of my sons, my younger son Dave, when he was in high school, I think, he always took an interest in cars. And he was like super neat nick about things, and people knew that about him. So he created a business called Davo’s Detailing.

And I said, “You know, Dave, if you’re smart about this, you would hire other people to do the detailing. Pay them like 10 bucks an hour,” which is a lot more money than they were earning at the time. “And you know, you keep the difference and you manage your relationships.” And I think he just loved the detailing so much. It just was like a more modest business than it probably could have been. But yeah, I can relate to what you’re saying.

As we switch gears and talk about special needs, I’m sort of curious to know, before Sebastian’s diagnosis, did you or Theresa have any exposure to the world of special needs?

Chris Velona: No, not to special needs. I mean you saw a few families around town, and you kind of knew that that was—forgive me this is before my education in this—that was the “different family,” that they were weird, whatever. But I always had compassion. I always like, “Wow, that must suck.” And it was not so much challenging as it was, I just didn’t understand it and I didn’t have to deal with it. So I didn’t give two shits about it, to be honest with you.

But I was aware of it. I mean, I never had any neighborhood friends or any kids, but it was like, when you’re around the adults, and you see these parents. That’s what was really scary, watching them, and you didn’t know what to do for them or how to even treat them. So you just kind of was like, “Yeah, I got to go.”

David Hirsch: Yeah. Well, I think to a lot of people, if I can paraphrase what you’ve said, it’s a little bit out of sight, out of mind. And, no, if you don’t have any direct connection or exposure, it’s really hard to appreciate or understand what’s going on. I think a lot of people feel uncomfortable around people that are different. It’s not being judgmental, maybe it’s just human nature.

Chris Velona: Now, I gravitate toward those families. I see a kid in a wheelchair, you see a kid who can’t talk or see, you’re like, “Hey, come here. I got you. Let’s talk.” And it’s a completely different mindset. I know this is gonna sound weird to say, but I’m absolutely grateful. Grateful that I had this opportunity to be a rare disease family, to be a rare disease dad. It really opened my eyes and it actually changed me.

I would say that sobriety changed me, but dude, having a rare disease while in sobriety completely changed me even more, to where you have this affinity, this open world view of everything. And you’re like, “What’s going on right now? What else do I have to look forward to? I mean, what else you gonna put on my plate?” And now I just say, “Just bring it. I got you. I’m ready.” You know I’m tired, David, but I’m ready.

David Hirsch: Yeah. Well, thanks for sharing. So what is Sebastian’s diagnosis, and how did that diagnosis come about?

Chris Velona: So Sebastian is diagnosed with Batten Disease. That’s Batten Disease CLN8. There are so many numbers of this same disease, and each variant has its own code, and so they name them by numbers. So it always goes, CLN1, 2, 3, on and on and on. I think it’s up to like 12 or even there’s a couple new ones. The data is always coming in, so we used to say there’s 13 known variants. There’s maybe one or two more at this point. We’re in 2021.

He was finally diagnosed through genetic testing after being diagnosed, or misdiagnosed, with just having epilepsy. So the epilepsy started like around five years old. And then his clinical diagnosis was several years after that, because not only was he having seizures, but he was also losing his ability to walk. He was falling down. He was not being able to see. It took him a long time to get sentences out, and these other things just were not consistent with just epilepsy.

So we were very, very worried that something else was going on. And you go through the rigamarole of like, “Well, give him some eyeglasses. Maybe the focus of the eyeglasses will pull his eyes and make him see better.” That didn’t work. “Well, maybe he just needs to eat something different, maybe a different diet,” and all this other crap that you go through.

But nothing worked. So you get that diagnosis. What was really just the punch to the gut, David, was when you get that genetic testing, and he’s got Batten Disease CLN8. There’s no cure. There’s nothing we can do for him. You might as well just take him home and live your best life, because there’s no way he’s getting out of this alive.

And that was very true, back in 2010 to 2012. You were devastated. There was nothing going on that I knew of, because I didn’t know anything about it. So yeah, that was the game changer. Like, “Holy shit.” So now the clock is ticking, and when is he gonna die? Because when you start doing your research and you become this WebMD guy, it’s not pretty out there. It’s just horrifying stories of kids in Batten Disease land as I call it. And it’s not a great life, and it’s a horrible death, and it’s just destroys you emotionally. So, yeah, it was an awful day.

David Hirsch: So if I can paraphrase what you’ve said, you went from knowing that he has epilepsy and some other things, but not knowing what those other things represented, to getting the diagnosis of Batten Disease CLN8, and then having a crystal clear or better understanding about what the situation is, which sounds devastating, because the life expectancy for somebody with Batten Disease is, what’s the range? On the low end, on the high end. I don’t mean to be too morbid, but just to be real.

Chris Velona: Well, no, there’s nothing wrong with being morbid. A lot of people don’t know. We were told he may live into his early teens, or he may not. They’re saying that these children that are diagnosed early, in the ages of like one to two to three years old, they don’t live past 10 or 11. Their life expectancy is really bad. And so they said that because Sebastian was diagnosed so late, he may have a chance to get past his teenage years, but the data wasn’t there.

And so they gave us a couple of due death dates that he’s actually surpassed. So they didn’t know. They didn’t know everything. They were just going off previous data, you know. Seeing a late in this category of Batten Disease is basically very rare in Batten Disease land. And there’s not many of the 8’s. There’s a lot more cases of CLN1. Sorry about that. Yeah, that’s my dog, Sophia, doing her job. Chasing the squirrels, I apologize.

David Hirsch: Or protecting the neighborhood, right?

Chris Velona: So I mean, you have a lot more cases in children suffering from CLN1, 2, 3 and 6, as you do in the upper numbers. So there was a lot more research, a lot more studies, and a few treatments coming out. So it wasn’t that they…you know, it’s like you want to cover your ass all day. The doctors never give you any hope. They just tell you the grim, and if you happen to survive, great.

And that’s what we’re doing. We’re surviving. We’re beating the odds, as they say. And I hold that it’s because Sebastian’s one tough cookie. He’s got a resilience. He doesn’t let this disease define him. And he doesn’t give in. He’s a fighter, and he just doesn’t care.

But the most amazing part about this kid is that he cares about the other children around him that are also suffering some sort of disability. Like he’s in a classroom with other children. I see him because I sometimes go into the school, and basically he’s just taking care of them. He wants to talk to them. He doesn’t want his schoolwork. He doesn’t want to talk to the teacher. He wants to talk to them. He wants to take care of them.

He’ll get down and give him a hug and give him a pat on the back. And you know, it’s incredible, the kid that has all these challenges, all these things going wrong with him. He can’t see, he can’t really walk all that great, and he can’t really say much. And he is just here. And then he’s helping others in their daily life.

And I know what you’re thinking. It’s like, how does he do that when he’s suffering from something so fatal? And I don’t know. I don’t know why he does that, but it’s amazing to watch. He’s always asking about somebody else, and he wants to know how you’re doing, and what you’re doing, and when you’re doing it. He’s very curious.

And like I said, he just celebrated 18 years of life and he’s not supposed to be here. So the only thing I can come up with, David, he’s got a resilience to live and fight this disease. He’s got two parents, even though we’re broken up, who are still fighting for his life and doing great things for him and others.

But also it’s got to be  said, he’s the only child so far that has a split mutated gene of the CLN8. He’s the only child on record so far. So maybe this is why he’s not as bad as some of these other kids in the CLN8 family. Maybe this is why he’s still able to talk better, walk better, eat on his own. Which sucks.

But if you look at these other kids, we’re pretty fortunate to have what we have. As they say, it could always be worse, and we’re always cognizant of that when we talk to other families and stuff like that. So it’s a really weird place to be in. You know, David, it’s a really weird place to be in. I’m just grateful.

David Hirsch: Yeah. Well, thanks for sharing. Sebastian sounds like a very capable young man, and it is an unusual situation where you have somebody with a fatal diagnosis like you’ve described who is able to somehow think about other people and not dwell on his own mortality.

And a thought that comes to mind, there’s a very good friend of mine, his name is Johnny Imerman. When Johnny was going through testicular cancer treatment for the second time in his early thirties, he decided while he was still in the hospital, to go to the pediatric cancer ward, just to get his mind off of his own situation.

And it was such a profound experience, he recruited some of his fellow cancer patients to volunteer alongside him with these little kids with pediatric cancer. And that morphed into what turned out to be a life calling of his, which was to create something called Imerman Angels, which is one of the most well-respected peer-to-peer cancer support organizations in the country.

And they’ve recruited over 8,500 cancer survivors to mentor the cancer fighters, and they’ve matched them, no exaggeration, more than 50,000 times. So it’s really a beautiful situation that was birthed out of this. How do I deal with my own challenges? By keeping my mind healthy and thinking about others.

And I think that maybe that was a gift that Johnny had. That’s a gift that Sebastian has. It’s not something you can tell somebody. It’s not something you can teach somebody, right? It’s just their gift coming out, if you will.

Chris Velona: Yeah, that sounds awesome.

David Hirsch: Was there some meaningful advice that you got, that helped you put this circumstance into perspective, that’s helped put you on a better path?

Chris Velona: Let’s see. I met this one lady who’s quite well known in Batten Disease land, Kristen Gray, who has two daughters who are suffering from this horrible disease. They have Batten Disease CLN6. And she said, “You know, you have to be patient. You can’t hurry up science. You’ve just got to be patient. And in the meantime, you’ve got to keep your kids moving and keep them healthy. And you got to treat yourself as if this is the last day you’re ever going to have. So make it the best.”

And I really took that advice. It’s like, “Oh shit, this is really happening. We’re really here.” And I’m watching this woman do it. And I’m like, “Holy crap. All right.” And it’s what I did. I didn’t take him to Disneyland every day and that kind of crap. I was just like, “I’m gonna be present.” And that’s me. I am a stay-at-home father. I am present every day for him, taking care of him, doing what I need to do for him all the time.

We have a team of people at the house, as well as at the school. And that’s because we just kept advocating and kept asking and kept pushing, because if you know anything about rare disease parents, we’re very tired, because we’re doing everything, all day, every day, for the child.

And then there’s the whole aspect of raising your other child, if you have siblings who are healthy. I have a 16 year old son named Gage who lives with me full-time. So you’re always doing something. I just never forgot that it’s just be present. I honestly think I have an upper hand on a lot of people in rare disease because I have this group called Alcoholics Anonymous. I think that the men and women in that group for the last 26 years have taught me more about life than if I didn’t have this group. They say, “Just suit up and show up, sit down, shut up, listen. Do what we say, not as we do. And just follow the program, man. Just stay sober one more day.”

And so it’s like, just stay present one more day. I joke about this a lot, but it’s true. When you get this horrible diagnosis, moms freak out and dads check out. It’s true. There’s not a whole lot of dads around. And these mothers, God bless them, they don’t have a whole lot of help. So we have to do something.

I’m glad we’re talking, because this is me doing something, and it’s not me telling you, “Oh, I need help.” Well, yeah, we all need help. We love donations. We love mentorship. We love doing the stuff that makes our children happy. But what we’re doing right here, Dave, I think it’s much more needed.

And it’s called connections. My podcast “Connections with Purpose” was started because I needed something. I needed you guys to listen. I needed you to hear me. And Project Sebastian was created out of this horrible situation. And I’m really proud to tell you that Project Sebastian is still here.

A lot of foundations don’t last two, three years. Nonprofits, they fail all the time. I don’t know why or how I’m still here, but it’s because I just try to keep it fresh. So we’re out of that business of raising money for cures and stuff like that. I’m gonna leave that to the big guys. So Project Sebastian is pivoting into a brand new space.

David Hirsch: We’ll get to the Project Sebastian in a moment. But you touched an antenna when you made reference to your younger son, Gage, and I’m sort of curious to know what impact Sebastian’s situation has had on his younger brother. Or the extended family, for that matter.

Chris Velona: Well, that’s a whole ‘nother podcast. In short, it affects the family, absolutely, everybody involved, from grandparents, parents, siblings, sisters, brothers, cousins, nieces, nephews, even the neighbor. This is an infection, a ripple effect of either just terror, fear, sadness, joy, anger, resentment.

And I’m saying all these things because I’m talking about my son. You know, we’ve had long discussions about how he feels about his brother. He says, “This sucks. I don’t want this for him. I don’t want this for anyone.” And he feels horrible. And he is very cognizant that his presence alone makes his brother feel good. So Gage has that ability, like his brother, to care about others, and I have no idea where he got these things from, because if he knew me back then, I didn’t. I was very self-centered.

So he’s got a special relationship. You can say that they even were best friends, but then when the diagnosis really started to present itself, it was really hard to be around him, you know? So that friendship kind of suffered a little bit. And it hasn’t only been until like a couple years ago that Gage realized that this is really who he is. And so he’s really made time just to be with him and to accept it.

But ultimately, I think as anybody else would say, he’s sad, he’s angry, he’s resentful, at something or someone of course. But he’s here. He checks in with Sebastian every day, and they have these long conversations.

We just went to Hawaii. There were the old beds where they’re kind of like, they meet at an intersection, the corner beds. So they got one head here, one head here, and all they did was talk all night, like they were five again. It was really cool to see. You’ve got a 16 year old and an 18 year old talking like they’re on a sleepover. It was cool.

David Hirsch: Yeah. Well, it’s refreshing to hear that while there’s some challenges and a lot of uncertainty, like you’ve described, that they’ve been able to maintain their brotherly relationship at the level they have. Right. That’s got to mean a lot to you as a dad too.

Chris Velona: Yeah. I think it’s just ever evolving, you know? I think you have to just adapt. You really do, because you don’t know how long we have. Especially with your children who are suffering this horrible disease, you don’t know how long they’re gonna be here. So being mindful and being present, you know, that’s the thing I want to try to create. I want to try to create a whole new infectious type of disease.

David Hirsch: There’s an infection, or what I think of as an affliction, because like a disease or infection has sort of a negative connotation, but an affliction doesn’t necessarily have to be a bad thing. So I think you’re on to something there.

I’m thinking of supporting organizations and I’m curious to know, what organizations has Sebastian relied on, or has your family relied on, for Sebastian’s benefit?

Chris Velona: The first thing I always talk about is going to government. The good kind of government. And the good government is your SSI, your SDI, your local regional center that has laid out a great plan of care for your disabled child or your rare disease child, or even special needs child.

So we rely heavily on our North LA County Regional Center that has provided us free of charge in-home nursing, where an LVN comes to the house and is able to maintain or shadow Sebastian, so that we as a family can do other things or help the other child, or even make a few bucks here and there, or maybe go to work, that kind of stuff, which is very rare in this world.

Other than that, we have relied on outside patient services such as some local businesses, where we do physical therapies that have actually maintained some of the longevity in Sebastian’s ability to walk and run, to keep his body as fit as possible and as healthy as possible.

And then I often joke about this, but it’s true. We treat Sebastian like the number one round draft pick going to the NFL. We have a nutritional program, we have trainers, we have a support system, we have mental health providers. We have everything that is possibly able to help him, predominantly free of charge most of the time. Some of these services cost a lot of money, but the heavy lifting is done by your state officials, which is what we pay our taxes into.

So you just have to research that. And I believe you have a couple of friends, David, who are in that side that actually showed me a couple things when we first met. So yeah, you just have to research and ask about it, but we’re very blessed.

David Hirsch: Excellent. Well, thanks for sharing about the local government programs and information that’s available. I’m wondering if there’s any other organizations.

Chris Velona: You know, when you get into this community of rare disease, you find other like-minded individuals or families or parents that are suffering. And we found a lot of information from the Batten Disease Support & Research Association, the BDSRA, here in North America. They’ve been a tremendous source of information and help, just to kind of guide you through the questions and the fears. They also offer financial support in certain situations, and they also have a family annual conference where everybody comes together and shares their story, and we get to meet them.

So, the people that you meet online—Facebook, Instagram, and Twitter—are actually real people. And you’re able to share your stories and your hugs and your tears. And there’s a weekend full of doctors giving updates on current trials and treatments and stuff like that.

And there’s a sister organization in Europe called the BDFA. I think there’s another one in Australia. But what really started it all was that lady, Kristen Gray, and the organization that she started for her two daughters, Charlotte & Gwenyth Gray Foundation. And that was the lady that really put it into perspective. “Go to work, Chris.” That’s what she said. “Go to work.” And that’s what we did—we went to work. We started a foundation and started raising money and awareness.

So those three entities really were like lifesavers. They got me out of myself, and they got me into some action, and they got me into some real information, some serious, truthful information about this disease. But unfortunately, there is no cure yet. There are only treatments to either prolong some decent life, or the inevitable will come.

But you know, having someone on the other end of that phone that’s knee deep in the same stuff as you, that was the connection I was so craving. So yeah, check those three out. They’re amazing organizations.

David Hirsch: Well, thanks for sharing. And I’m not blind to the fact that both you and Teresa have made your own efforts, you in the name of Project Sebastian. So let’s talk about that. When did that start and how did that evolve?

Chris Velona: Project Sebastian was created in 2010. I was going to cure epilepsy.

David Hirsch: That’s because that’s what you knew he had, right?

Chris Velona: Right. That’s what he had. And I was gonna cure him with medical cannabis. And so I created a company called Sequoia CBD, and we had botanists, and we had science guys, and then we partnered with UCLA, and we were in a off book test and study where we were working on Dravet Syndrome and then Sebastian.

So we had the worst kind of epileptic seizures. Sebastian was having like one or two a month, and it was very successful. And then it wasn’t, as the laws changed and the people got greedy, everybody had to bail, and we lost everything.

So during that time, in 2012, we repurposed Project Sebastian in the medical research for our EIN to have just medical research. So now we’ve basically said we’re going to cure Batten Disease. So that first month of the Project Sebastian was for Batten Disease research, and just this year we decided to pivot out of that into rare disease as a whole.

David Hirsch: So yeah, it’s evolved. That’s what I hear you saying, just like this disease. Which is not like a lot of other situations, whether they be for-profit or not-for-profit. And what did you start writing initially? Was there a blog before the podcast, or what was the sequence?

Chris Velona: Man, David’s going deep into the research. Yeah, I had a blog. Somebody told me to go on Tumblr and start just writing my feelings and my stories and my thoughts and my fears. And one thing I love about myself is I love writing. I love writing stories. And I have tons of journals that I need to publish. Thank you for reminding me.

And it’s just one of those things where it just feels good for me to put the pen to paper. That’s my therapy, because nobody’s listening. That was my whole MO. “You’re not listening, so I’m just gonna write it.”

And that just became a couple of articles here and there, and someone told me to post it on LinkedIn, and then they said, “You should create a website on Twitter and Facebook.” And so it’s just kind of evolved into this social media machine.

But it’s really tough to keep up with everything. I no longer contribute to Tumblr. I usually just push out a couple of articles here and there, when I get really upset, to LinkedIn, whether it’s about rare disease or mental health. But yeah, I really enjoy writing.

David Hirsch: Well, thanks for sharing. And I’m sort of curious to know, what was the name of the podcast? Was it “Connections With a Purpose”?

Chris Velona: No, it’s still there. It’s still there. And my new friend Effie tells me I should dust off the old microphone and get behind the mic again, because I had a podcast for over two years as well. At first it was called the Project Sebastian Podcast, where we interviewed families and doctors and friends, and talked about this horrible disease called Batten Disease. And it just kind of evolved into people talking about rare disease, and people talking about business and rare disease, and doctors coming on about different types of things.

And then I needed to create a business at home, because I just couldn’t make any money. So I created a company called Consulting with CSG for diction recovery. And so I said, “Well, I got to have a podcast about that.” Because everybody has a podcast, even me. And so, I just kind of like hung up the microphone on “Project Sebastian,” and we created “Connections with Purpose,” and we just started talking to everybody about what your connections were and what your purpose was.

And that lasted some pretty good episodes. And then I just kind of got burnt out, and I haven’t recorded a podcast since January of this year, and I didn’t even put that out. I don’t even think I published it. It was about how, “We’re gonna make some new changes around here. Project Sebastian is now this podcast, and we’re gonna talk about this……” I’m like vomiting in my mouth. It’s just ridiculous.

And I just got really burnt out. I got really burnt out, David. I don’t know if you can understand this, but when you’re constantly battling something you can’t win, sometimes you give up, you lose hope. You just check out. And they call that rare disease burnout.

So I’m talking to this other woman from Neurogene, Gay Grossman, who’s amazing, and she tells me it’s normal. It’s normal. “You should call these people. I know them personally.” She gave me this email for these ten men and women, and one of them was Effie, who’s got her own podcast called “Once Upon a Gene.” She’s got this amazing kid named Ford with just a number for a disease, because it’s so rare

And wow, man, what a breath of fresh air. She’s been such an inspiration. She just told me to start connecting with these people again, and just kind of go around and talk about it and just get back into it. And she says, “But we’re gonna start with my podcast.”

So I found my legs again, and she was like, “You better start that podcast. I listened to some of your episodes. You’ve got something going on. You better do it.” And so she kind of put the fire back in me and, then all of a sudden, David calls me. Hi, David. So here we are.

David Hirsch: Yeah, well, Effie is a really special person. And you know it’s not lost on me—she’s a super young mom with a super young child. Obviously it’s part of her therapy as well. But she’s making a huge difference in a lot of people’s lives, and she’s really a spark plug in that regard.

Chris Velona: Yeah, yeah. She made a difference in my life. That’s for sure. Amazing. And I think she’s just won “Podcast of the Year” too, on one of these award shows.

David Hirsch: Yeah. That’s really cool. So I’m thinking about advice, and I’m wondering if there’s any advice that you can offer a dad, not necessarily a rare disease dad, but a dad who’s raising a child with differences, to help him focus.

Chris Velona: Oh, man, many things come to mind. But there’s one thing that’s really missing, which I’m going to be changing here about myself, because I was suffering from this. And it’s just stop checking out. Start checking in, start being a part of groups, start connecting with these moms and dads in rare disease.

It doesn’t necessarily have to be your rare disease, but it just happens to be in the same scope of finding other men and women to connect to who actually are going through, maybe not the same thing physically, but the same thing emotionally.

Rare disease is horrible. It sucks. And if you don’t have a support system, you find yourself checking out. Like you maybe get burnt out. You start drinking, start drugging, you start falling off the planet, you stop being present, and then stuff really starts getting haywire.

So the number one thing I would say is to connect with other rare disease families. Introduce yourself. Extend the hand. And you may not be welcomed at first, because people may think you’re weird, but that’s okay. And be someone that will receive your call and understand that, “God, I needed to talk to this stranger, because this guy gets me more than my own family who hates me.” And that’s what’s happening. That’s the truth too. So connect with others, for sure.

David Hirsch: Great advice. I love that phrase that you’ve used a couple times. Stop checking out and check in. It’s really clear. I’m sort of curious to know, why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Chris Velona: Well, because I feel that that was missing, you know? That was something that was missing. You know, in my other life, my other 12-step life,  I sponsor guys. That’s kind of a mentor. But I didn’t know that it would translate into rare disease and helping other men and women. But I’m finding that that’s really important, and I think it’s overlooked, and I think it’s under provided.

And when I found out about you guys, I was just so excited, like, “Wow, there’s a dads’ group dedicated to helping other men. I want in.” It’s hard to find us. I’ve been on a few of your Zoom calls, and looking at these guys on the screen, I think, “Wow, that disease, that disease, that disease— I mean, there’s a whole mixture of guys going through some shit.”

But the one thing that they’re all connecting about is their emotions and their challenges, and their gratitude is amazing. And it’s like, I didn’t know anybody else felt like that. I want to be that guy. So, you know, that’s why that’s the answer, David, if that makes sense.

David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you for being part of the Network. Is there anything else you’d like to say before we wrap up?

Chris Velona: Yes, I’d like to just make an announcement if I could, about Project Sebastian. All right, so like I said, we’re transitioning into a lot of different stuff. We’re trying to help everybody in rare disease, and the one thing that we feel that is falling short is this aspect of what David and I are doing. We want to really expand this type of therapy, these connections.

So Project Sebastian is going to start offering group therapy sessions, right now on Zoom of course. We’re trying to set that up, and we’re gonna have it open to everybody in the world that’s suffering from a rare disease or an illness. We want you to connect with these other families.

Right now we’re also working out a deal to have in-person meetings once a week out here in Valencia at a church, where basically you can come in and talk to other rare disease families about any topic you want to talk about.

And I think that is something that is going to really be useful, because it’s useful to me. I’m sure David can relate, to where we all have to help each other. A lot of us don’t understand how to get the help or where to get the help. But sometimes we only want to be heard, or to throw up on somebody, or to hug somebody and just to simply say, “I get that guy. I understand that gal. Wow. I felt like that too.”

And keep coming back, as they say, because you know, the secret is always the next meeting. So that’s what we’re gonna start doing. We think that it’s a great niche for us at Project Sebastian, where we can offer a group type of community support.

David Hirsch: I love it. Let’s make it a point, Chris, to circle back a couple years down the road and get an update on that vision you’ve just shared. Let’s also give a special shout out to Effie Parks for helping connect us.

Chris Velona: Ah, absolutely. Thank you Effie, and thank you David. You guys are awesome.

David Hirsch: If somebody wants to learn more about Project Sebastian or contact you, what’s the best way to do that?

Chris Velona: I’m an open book. People don’t like it. People trying to protect me, but I don’t care. So you can reach me at projectsebastian.org. Email me at info@projectsebastian.org. My phone number is (661) 414-4856. The office currently is at 25688 Alicante Drive in the city of Valencia, California, otherwise known as Awesome Town.

And feel free to stop by. Feel free to call me. Just do something, as we say now. You know that guy Andrew Shue had it down—and I couldn’t stand that guy years ago—but it’s true. Let’s do something. Let’s make a difference. Seriously. Let’s do something.

David Hirsch: Yeah, well, we’ll be sure to include all that in the show notes so it’ll make it as easy as possible for somebody to reach you.

Chris, thanks again for your time and many insights. As a reminder, Chris is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concern. Would you please consider making a tax deductible contribution? I would really appreciate your support,

Chris, thanks again.

Chris Velona: You’re welcome, David. We appreciate you, and if you ever need anything, I’m always here.

Tom Couch: And thank you for listening to the Special Fathers Network Dad. to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Also, please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.