Our guest this week is Joe Lang of Sacramento, CA who is managing partner at Lang, Hansen, Giroux & Kidane, a lobbying/government relations firm, as well as the co-founder of Jordan’s Guardian Angels, a non-profit whose mission is helping to improve and bring joy to the lives of children and families in the Coachella Valley and beyond.
Joe and his wife, Cynthia, have been married for 18 years and are the proud parents of two children; Blythe (30) and Jordan (16), who was diagnosed with PPP2R5D, now known as Jordan’s Syndrome.
We’ll learn about the Lang family journey, how PPP2R5D was named Jordan Syndrome, how Jordan’s Guardian Angels came into existence and how they support & bring joy to the lives of families raising children with special healthcare needs.
Jordan’s Guardian Angels – https://jordansguardianangels.org
Family Conference Documentary – https://jordansguardianangels.org/watch-our-story/
Email – email@example.com
Phone – (916) 708-1802
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.
Joe Lang: It was about an hour long phone call, talking about things, and at the end of that phone call, she said, “Okay, Joe, I’m in. Columbia will be all in. We’re going to put a team of researchers together from a whole variety of universities around the world.”
And she says, “I can’t promise you, but based on what I’m seeing right now, we’re going to put a team together of the best and the brightest, and I think we can find some answers for Jordan and the other children that have this mutation and improve their lives.”
Tom Couch: That’s our guest this week, Joe Lang, a father of two, including Jordan, 16, who has a rare condition that has since been named Jordan’s Syndrome. We’ll hear how this came to be, and we’ll also hear about how Jordan’s Guardian Angels are helping to improve and bring joy to the lives of children and families.
That’s all on this Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.
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.
Tom Couch: So let’s hear this fascinating conversation between Joe Lang and David Hirsch.
David Hirsch: I am thrilled to be talking with Joe Lang of Sacramento, California, the father of two and managing partner at Lang, Hanson, Giroux & Kidane, a lobbing/government relations firm, as well as the co-founder of Jordan’s Guardian Angels, a not-for-profit whose mission is helping to improve and bring joy to the lives of children and families in the Coachella Valley and beyond. Joe, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Joe Lang: Thank you David. Obviously, as a special needs dad, I admire the amazing work you’ve done in creating a network of us special needs fathers around the world. It’s welcomed. It’s exciting. I’m glad to be able to talk about it a little bit. As a dad, sometimes I can probably talk longer than I should, but you’ll detect that from the passion we have in helping make our children’s lives be as good as they can be.
David Hirsch: We’re glad to have you. So you and your wife, Cynthia, have been married for 18 years, and are the proud parents of two children, Blythe, who’s 30, and Jordan, who’s 16, who has been diagnosed with PPP2R5D, also known as Jordan’s Syndrome.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Joe Lang: Born in Detroit and lived there until I was five. Middle child of five children. About the age of five, my father became an engineer in the aerospace world and we moved to Seattle because he went to work for Boeing. Spent a couple years in Seattle. That was in the early sixties, and all of a sudden a big aerospace boom was happening in Southern California: Northrop, Honeywell, Lockheed, all of those folks.
So my dad was lured away from Boeing to go to work for Northrop, and we made the trek down to Southern California, which is where, David, pretty much from the age of seven to going away to college I was hanging out, mostly being raised there in the Los Angeles region.
David Hirsch: Okay. So I’m curious to know, how would you characterize your relationship with your dad?
Joe Lang: Yeah, it was always respectful. My father was helpful in guiding, but I don’t think he felt like he had to guide too much. For some reason, I was at the time laser focused on what I wanted to do. I actually had planned to be a doctor. In fact, even in my college career, I had done all the preparations for med school, until the folks who were doing the med school counseling convinced me not to do it anymore.
David Hirsch: Okay. Are there any important takeaways that you can think of when you think about your dad? A lesson learned that you’ve tried to perhaps incorporate into your own fathering?
Joe Lang: I think it was being able to watch and learn as challenges come around in life, especially if you have five children and are not at all independently wealthy or well to do. There were lots of challenges. But what I always will remember with that is that he had an ability to persevere. Keep your head down and keep moving ahead. To this day, that is something I’ve valued quite a bit and learned how valuable that is in life.
David Hirsch: Yeah, well, there’s no question that perseverance is a really important trait, whether you hear it how important it is, or maybe you witness it, like I think what you were saying with your dad. You didn’t hear him say how important perseverance was. You just witnessed his perseverance and how he would handle himself. So thanks.
Joe Lang: We all have challenges in life. So having been able to witness, and I guess grow up and absorb that ability to persevere and move forward is a valuable thing.
David Hirsch: Is there a particular story that comes to mind when you think of perseverance in your dad?
Joe Lang: There were probably a variety of health challenges within the family and some financial challenges that came along the way. As I was growing up, it was kind of a big deal within the family if dad came home on Friday and he had an extra $10, because you could go to the drive-in movie. It was $5 per carload, so all five of us children piled in the station wagon. You could get in the movies for $5, and then you could each get a quarter for popcorn. That was a big deal.
So, yeah, perseverance in whatever the challenges were. When I was quite young, I had a couple of health challenges that were very rare. I had an ear infection that actually invaded into the cranial cavity. I was five at the time actually, and I remember getting the treatments for that. This was in 1960. And they were wondering whether or not they were going to have to try brain surgery. Which at that time, brain surgery truly was new. It turned out they didn’t have to, which was good.
So I can remember challenges like that, living through them and having my parents be strong and keep me on the right track.
David Hirsch: Excellent. So my recollection was you went to the Air Force Academy. You’d mentioned previously that you were thinking about being a doctor, but where did your career actually take you?
Joe Lang: So I started out the Air Force Academy, then finished my college career at the University of California, Davis. I had planned to be a doctor. Interesting, at that point 50 years ago, specialization was all the rage in the medical world. I had actually not wanted to specialize. My view of being a doctor was I wanted to be a family doctor. I wanted to be a general practitioner.
And it was interesting how many of the doctors in the program at Davis basically just said, “Joe, everything is specialization now. You have to specialize. And if you don’t, you’ll work very hard and you won’t make very much money. You won’t enjoy life.”
And they essentially talked me out of it. And so at that point, I kinda looked around and said, “Okay.” My second love of life was really politics, right? I was lucky enough to do an internship in Washington, DC, when I was a junior in high school. And having done that and having had that experience really lit the fire in me.
And so I switched, finished my bio sci degree, and went to political science/ public service degree. That took me to the capital here in Sacramento. This is actually my 47th year being around the capital in Sacramento. So I was lucky enough to be asked to start working when I was still in college and start when I was 19.
David Hirsch: So what does a lobbyist and government relations person do? What does your firm do?
Joe Lang: Well, a lot of people ask me about that, David. I think the easiest way to answer that question is, if you think about a law firm and attorneys that represent clients in the courtroom, what lobbyists do, what a firm like mine does, is to represent clients, but over in the state capital. So our venue, rather than being in court, is in the state legislature, in the state capital.
And our job is to engage in policy discussions, engage in discussions about different pieces of legislation, and ultimately help to educate policy makers and legislators on the real impacts of what they’re doing and impacts on my clients’ businesses and jobs in the state, and help to have ultimately advocate for the right outcome.
David Hirsch: So do you represent big businesses, small businesses, individuals, or is it across the board?
Joe Lang: Really across the board. I’ve been blessed. We’re a rather large firm here in California. We have Fortune 100 companies. We also have some trade associations we represent, the ophthalmologists in California, and a few other associations like that. We do a little work with organized labor as well. And then we have some, well, what I would call labor of love. So we have a few 501(c)3 nonprofit groups that we help in their pursuits as well.
David Hirsch: Excellent. Well, no doubt you’ve developed a high level of skills on both sides of the aisle, right. Because it takes an effort to look at the situation from different perspectives. Like you said, I think it’s more job of enlightenment and education, so that people can make more well-informed decisions.
Well, let’s switch gears and talk about special needs. Prior to Jordan’s diagnosis, I’m curious to know if you or Cynthia had any exposure to the world of special needs?
Joe Lang: Not really. I had siblings that had different issues, a brother that did have a mild form of epilepsy. But no more exposure than probably most other people in the world who would see handicapped people.
At the beginning of my work in the legislative arena, I actually did some work on behalf of a family in Southern California whose daughter was actually one of the first children at that point—and she wasn’t a child at that point, as this is 50 years ago, 44 years ago at UCLA—when they coined the term “autism.”
So I was exposed to autism and handicaps early on, and worked on legislation that ultimately became the legislation here in California that requires that special needs children have a right and access to an education just like typical children. So I had that exposure.
But it was really when Jordan was born. Within 20 to 30 minutes after she was born, we knew there was a problem. At that time she was kind of congested and so was struggling a little bit with breathing. And so we went through essentially a five day stay at the NICU unit in the hospital. I’ll always remember, Cynthia and I both, how they brought the different experts in to look at things.
Jordan was born at 7:30 in the morning, but it was actually later that evening where one of the specialists come in and measured our heads and said, “Gosh, did you guys meet at a big head convention?” It turns out just physically, my wife and I both tend to have larger heads. He was looking at that, because Jordan’s head measured large off the scale.
It turns out that a larger cranial cavity, macrocephaly, is one of the common symptoms of Jordan’s Syndrome, the mutation of the gene, PPP2R5D. At the time, all we knew was it was an interesting physical characteristic. Really not much more than that. And for the first nine or ten months of Jordan’s life, development seemed normal. Happy little baby. But about 10, 11 months we started noticing Jordan was missing a couple of little milestones that they look for in children.
That led us, and ultimately our pediatrician, to go to Loma Linda University Medical Center down in Southern California with some really good pediatric neurology specialties to basically see what’s going on here. That initial testing basically was inconclusive. And so they basically said, “Look, we’re not going to know for sure what’s going on, and the extent of it, until probably Jordan’s three and a half, four years old. So for the most part, other than the fact that Jordan didn’t develop speaking capability right…
David Hirsch: So she was non-verbal for the first handful of years?
Joe Lang: Yeah. And in fact, she is still is non-verbal. She makes sounds, but still not speaking other than the non-verbal nature and the fact that Jordan, as most children with Jordan’s Syndrome, was delayed walking. Basically it’s a hypotonia, which is low muscle tone, which is universal throughout the body in children with Jordan’s Syndrome, because the gene PPPP2R5D is so involved throughout the body, in not only neuronal development, neurological development, but also muscular development.
And so the children by and large have a significant hypotonia, so they’re mostly delayed in in walking. And then even when they do walk, it’s a little bit of a different gait. Now Jordan is not a runner, but when she wants to move somewhere, she can move pretty quickly.
But in the early development years, those are the things we noticed. After about five, we began to say, “Okay, you know what? This may be a longer lasting condition.” Turns out we hooked up with Dr. Asaikar here, our neurologist here in Sacramento, and we were just blessed that having been educated in London and the Mayo Clinic, he decided to practice here in Sacramento.
And so we began the journey with Dr. Asaikar to find out what’s going on. He did quite a few tests for all kinds of different potential conditions, some of which had similar symptoms to Jordan’s Syndrome. And all along the way, everything, all the tests came out negative. And while we were clearly curious, and wanting to know, at the same time as special needs parents, as a dad, you also have to just live life, right?
And so you live life. You take joy in those incremental achievements that parents of neurotypical children would look and say, Hmm. But to us as special needs parents and fathers, you see that incremental improvement, and even though it’s a very minor increment, it’s very, very important, and there are lots of celebrations in that regard. So you live life.
We kept testing, and finally when Jordan was, oh, let’s see, nine and almost 10, Dr. Asaikar looked at us and said, “Well, there’s one more thing we can do. It likely won’t be paid for by insurance at that time. It will be called experimental, but we can map Jordan’s genome. If we map Jordan’s genome,” whole exome sequencing is the technical term, “we may see something. That may be the last thing to do, because we’ve just about tested for everything else.” So we said, “Okay, let’s do that.”
And to do that genetic sequencing, they take samples from the child as well as both parents. And essentially then they compare the results, and if, as they look, they discover mutations—if the father or mother had them and it didn’t result in any condition or concern—then you toss it out and essentially it narrows and narrows down the options.
And in Jordan’s case, the final thing left was a mutation on the gene PPP2R5D. It was brand new. In fact, the company that did the genetic sequencing, the genome mapping for Jordan, called us and said, “We think we have something new here.” In fact, they believed it was new, and they also had a hunch that it somehow could be significantly impactful.
So they called originally and said, “This is what we found.” The interesting thing is they didn’t give up, because they just had a hunch that this particular mutation could be impactful in a variety of different ways, and that it was brand new territory. So they said, “We’re not going to give up.”
And they went to work and looked at a variety of testings all over the world at that point, including a major neurological study done in Great Britain at the time. And so they called back a couple months later and said, “Joe, well, good news. We now know there are six other children in the world that have been diagnosed with this mutation,” all at about the same time, because the genome mapping was just beginning to be available.
The study I referred to in Great Britain was a thousand children, and they offered the genome mapping for free. And that’s how they identified I think three of the children of the initial six. As a dad, I remember thinking, “Oh, my gosh. So Jordan is one of seven in the world.”
It was interesting to have an answer to what was impacting Jordan. And so then, with those results, and of course then having the idea, the sense that there may be six other children in the world, we then met with Dr. Asaikar to go over fully the results.
And the interesting thing was, “Okay, now we have kind of the why. There’s this mutation out there, and it’s impacting things.” The next question was, “Well, what do we do? What do we do about this?” It was brand new, no treatments, no cures, and quite frankly, very, very, very little knowledge. I remember him looking at me and Cynthia and basically saying, “Well, we just have to get the research done to find a cure.”
And as a dad, I say, “Yeah, okay, that makes sense to me. Let’s do that.” I had no idea what that meant, other than, yeah, we’ll find somebody to do some research. I looked at him and said, “Okay, sounds good to me. How am I going to do that?” And I remember him looking back and saying, “Joe,” because we had become friends over that period of time, “you’ll know what to do. I’ll point you in the right direction, and then you’ll know what to do.”
And I thought, “Well, okay.” That was significant confidence he was showing. On my part, I wasn’t sure. But about a week after that, I was back on the phone with the lab director at GeneDx, who had done the genome mapping for Jordan, and we were talking a little bit. “Okay, I want to find an answer here for Jordan. What do we do?”
And she said, “Well, this is brand new. We do think this is a substantial finding from a medical science standpoint. And so we have done work with a researcher, a physician, a geneticist, all this rockstar of a person named Wendy Chung at Columbia University, and we think we need to talk to her.”
In about two and a half weeks, I found myself—actually, I think it was the day before Halloween that year—on the phone with Wendy Chung. I’m in my office here in Sacramento and she’s in New York. And it was about an hour long phone call, talking about things.
And at the end of that phone call, she said, “Okay, Joe. I’m all in. Columbia will be all in. We’re going to put a team of researchers together from a whole variety of universities around the world. I can’t promise you, but based on what I’m seeing right now, we’re going to put a team together of the best and the brightest, and I think we can find some answers for Jordan and the other children that have this mutation, and improve their lives.”
And I was like, “Wow, okay.” She said one other thing at that time, too. It was kind of interesting. She said, “And along the way we may actually answer a few other big medical mystery questions.” And I was like, “Okay.” I wasn’t sure what that meant. I remember saying that.
About a month after that, Dr. Asaikar and I traveled to New York City, and we had dinner with Wendy and her team. And a congressman, a friend of mine from Washington, DC, came up, because he was very interested. And we sat and said, “Okay, nice to meet everybody. What do we do? What’s the plan? How do we get this research done?”
And Wendy and her folks were really good at laying out a variety of things. They also had done more work looking at the mutation and the impacts and the enzymes involved, and basically became more convinced that there is a linkage to things like Alzheimer’s disease, some things that happen in Alzheimer’s patients. Actually there was linkage with the mutation in a variety of cancers—cervical, ovarian cancers, so it was a significant thing.
And as they were laying these things out to me, as a dad, I remember saying, “Wow, okay.” I finally had to say at the dinner “Timeout. Let me understand this.” And they said, “This is really a substantial thing.” I guess in some ways it was a little easier for me in that, gosh, 25 years earlier, Jonas Salk, the researcher that had discovered the polio vaccine, actually had been a client of mine, and I had worked with him on a project. And so I began to understand how people were looking at this.
As new discoveries are made in the medical science world, they can potentially impact a lot of different things. And so we had that conversation. And I said, “All right, Wendy, this is good. Let’s put that team together.” And then I had to ask the other question, as a dad, which is, “Well, how much is this going to cost?” I remember her saying at that time, “Joe, roughly speaking, plus or minus $20 million should get us to the place we want to go.”
Now at the time, I remember—because again, maybe this is kind of like my existence in my profession in politics, dealing with those big numbers—I remember thinking to myself on the way out. The congressman and the doctor and I were walking down the street after dinner, and he said to me, “Gosh, Joe, what’d you think?” He said, “I thought she was going to say $50 million.” And I remember turning around and saying, “Are you kidding? I thought it was going to be a hundred million.”
So in some ways, $20 million, you know, it was like, “Okay, I’m in. I can do that.” I’ve raised $20 million before for different efforts. It’s just, “Okay, that’s what we’ve got to do. It’s a task.” But I came away from that meeting in New York where things started. That was in early December. I remember over the holidays that year working with Wendy, and then actually Dr. Mirza in Seattle Children’s Hospital, who was one of the experts that Wendy thought should be involved. And we started putting together the list of who should be on this team, the dream team, if you will.
We got to a point of saying, “Okay, this is who. We wanted Richard Honkanen from the University of South Alabama, one of the premier phosphatase researchers had been researching phosphatase, which is involved in the mutation, for 30 years. Dr. Brian Budzinski from Vanderbilt and Stefan Strack from Iowa and Yongna Xing from University of Wisconsin at Madison and Hugh at University of Rochester, and Veer Lee Hansen at the university, the Catholic University there in Belgium, in Brussels. And then also Dr. Kyle Fink from University of California at Davis here, and then Jan Nolta, who actually runs the Institute for Regenerative Cures.
So we kind of mapped out what this dream team would be like, who should be on it. And of course, Reta Mirza from Seattle Children’s. And I remember right after the holidays thinking, “Okay,” and we talked about how we would make the invite. And we kind of divided it up, and mostly it was me as a special needs father and Wendy as a lead researcher in the world.
And I remember thinking to myself, “These are the best and brightest specifically at what they do. They’re going to be busy people.” And I remember thinking to myself, “Do we need to have a plan B here? Do we need to have like a draft team or a AAA ball club?”
It was interesting, David. Within two weeks, all of the researchers had said, “We want to be on this team. This is a really interesting mystery and it potentially is a big deal because of the potential impacts, even for children with autism and others.”
And so within two weeks, they had all agreed to be on the team. And that was the end of January. And by the end of March we were all meeting. There was already a conference that was scheduled in Phoenix, so we piggybacked on that conference.
We all met for the first time and planned how the research would go, who would do what, and made an agreement that we’re all a team and, there’s no role for individuals. We’re all a team, we’re all going to share data, and we’re all going to collaborate, and we’re going to make this happen. And that started the journey that we’ve been on, David.
David Hirsch: Well, thank you for the backstory. Very fascinating. And I’m curious to know, how did it go from being PPP2R5D to Jordan’s Syndrome?
Joe Lang: Well, that was an interesting thing. The researchers and some of the families actually had been talking, and everybody looked around and said, “This PPP thing is a hard mouthful to talk about.” And some of the parents had asked the research team to have something easier to call it, to explain to their friends and to their physicians around the world.
And many of them thought, “When you say PPP, that the uninformed average person would think you’re talking about pee pee.” And unfortunately, one of the symptoms of Jordan’s syndrome is it’s difficult to potty train. So the decision was made. We had to have a different term. And the researchers looked around and said, “You know what? We think it should be called Jordan’s Syndrome.”
And I remember thinking about that, and thinking, “Oh.” And I actually kind of put a pause on that for a minute. Cynthia and I talked about it for a while, and said, “Okay, well this is obviously interesting, and we’ve done some work here. Obviously we’re here to find a cure and help improve these children’s lives and Jordan’s life. Do we want Jordan to be known for Jordan’s Syndrome?”
At the end of the day, what we realized was personalizing it probably was an important thing to do. That would make it simple for the families around the world. So ultimately we said, “Yeah, okay, we’ll do it.” And that’s truly is how we went from being PPP2R5D to Jordan’s Syndrome.
David Hirsch: Excellent. Well thanks for the backstory. So I’m curious to know what impact Jordan’s situations had on your marriage, or perhaps your extended family for that matter.
Joe Lang: Yeah, I remember reading a daunting statistic that the divorce rate within special needs families, parents with special needs children, is somewhere around 91%. And I remember thinking about that, saying, “Oh, my gosh.”
Now, do I understand the strains that can develop and the challenges with special needs children? Absolutely. Looking back on it, it probably doesn’t surprise me. There’s probably a lot of different reasons for it. I think some human beings, some people, have a capacity to deal with special needs children. It’s not that they’re born with it, or that they were made for it, it’s just they have that capacity.
And some don’t. And it doesn’t mean that those aren’t good people. They’re just meant to do other things in life. I think it’s difficult for mothers, at least in my experience, because I’ve met a variety of mothers in the special needs children category.
No matter how much the experts will say, “This was not your fault, this is not anything that you did or because of you,” there’s this innate feeling like, “What did I do? Could I have done something differently that could have avoided this?” And that can be a guilt that’s a burden to carry. And it’s sometimes hard to overcome that, I think.
David Hirsch: Yeah. Well, psychologically I think that that’s just a human condition. And not to minimize it, because it’s real. But you know, I work in the world of investments. And people always second guess themselves. Coulda, woulda, shoulda, right? I should have bought, fill in the blank, Apple or Amazon or something, when it was an infantile company. Or I shouldn’t have sold something, because it’s gone up dramatically after I made the decision, even though I made a lot of money.
So I think it’s just a human condition that we struggle with. And I think one of the most important aspects that I’ve had drilled into me over the last handful of years, working with the hundreds and hundreds of special needs families that we do, is that you can’t change the past. So any excessive time you spend in the past is stealing time from being present.
And then if you get too far ahead of yourself, anticipating all the things, all the possible outcomes, worrying about that, you’re again stealing time and energy from being present. So that discipline that comes along with, “Hey, I just have to think about where I’m at.” Be in the moment, and maybe try to discipline yourself to be thinking months, maybe six months, ahead. Try to limit how far out you go, because there’s so much uncertainty.
And this is not just special needs kids, this is just life. But it just seems to be more pressure when you’re raising a child with special needs, and you’ve got these different challenges, some of which you’ve made reference to.
So let’s talk about Jordan’s Guardian Angels. My recollection was that it’s about five years old, it’s volunteer led, and you have this amazing team, like you’ve made reference to. You’re there to support the families. You do the family conferences. You have this very robust website. There’s a Facebook group. I know that that Facebook group was in existence before Jordan’s Guardian Angels, but I know that’s an important aspect for the families to stay in contact with one another. And you mostly fund research, like you’ve articulated.
What’s your vision? What’s your expectation over the next three or five years? Do you have any sense for where this is going?
Joe Lang: So, at Jordan’s Guardian Angels, we have a great team, not only of research scientists, we now have a total of about a hundred scientists who are actually working on this effort. We also have a great team that’s providing outreach and support for families all over the world who learn of the diagnosis and begin to struggle and understand. So we have a great outreach team, a support team for the families and children around the world.
Where are we headed? Amazingly, right now as we speak, we are ending a phase where, with the help of a biotech firm in San Diego, we will be developing an oligonucleotide, which is a fancy word for a customized molecule. And the job of that customized molecule will be to essentially put to sleep the copy of the gene PPP2R5D that has the mutation, right?
We all have two copies of genes, and the goal here is to put the bad copy of the gene to sleep and allow the good copy to flourish, and perhaps overexpress that good copy. They tried two other times. It didn’t work out in one, but in the other, actually within four months, the children with Angelman syndrome started to talk, started to walk.
Unfortunately, the side effect of that in that study was a neuropathy that made it more difficult for those children actually to walk without pain. And so the trial had to stop for now. They’re going back at it though. But we are at number three, and I think a lot of folks are watching, saying it may have been that there was an issue with the customized molecule that caused that side effect. And if we can avoid that, we might be proof of concept and it might become a very significant pathway for dealing with a lot of childhood genetic diseases.
In the next three to five years, Jordan’s Guardian Angels, we’re going to continue supporting families. Hopefully, God willing, we’re going to continue to be funded, that our fundraising efforts will work, and we’ll have potentially two different treatments and cures for children with Jordan’s Syndrome, and also, quite frankly, we think it may end up helping a lot more children in the world.
David Hirsch: Yeah. Well, from your lips to God’s ears, I’m hoping that’s the case. We’ll have to do a follow up interview a couple years down the road and check that.
Joe Lang: I look forward to it, David, and look forward to keeping you informed, by the way.
David Hirsch: So, I’m thinking about advice now, and I’m wondering, what comes to mind, what advice can you offer another dad, a fellow dad who’s raising a child with special needs?
Joe Lang: Yeah, that’s interesting. Wendy Chung, and then a couple of the other research team folks as well, Jan Nolta, Kyle here in Davis, they told me to be ready for that. And it’s starting to happen now. People around the world, other parents with other conditions, are saying, “How can we do what you’re doing? How can we get to where you are?”
And of course, we believe very strongly that part of our mission and obligation is to help them on a personal level. I get an awful lot of outreach from parents, or families, who maybe have a family member who has a child with a special need and they need help. They need to understand, and it is a very important role now. What we do in life is to do that.
So what do I tell them? “There is hope. There’s lots of hope. Science is moving very, very quickly. It takes perseverance, advocacy, and willpower. And it’s happening.” We do a lot of work there, David, at the basic level, helping other families with children with special needs, but also helping groups to achieve and follow our footsteps.
David Hirsch: Yeah. Well, we’re thrilled to have you as part of the Special, Fathers Network. So I’m wondering if there’s anything else you’d like to say before we wrap up?
Joe Lang: Yeah. I really have enjoyed this, David. I could talk forever. It’s a passion. You have to have passion. If this can be helpful, if there are parents and fathers out there listening, saying, “How do we help our children move forward? How can we help to do what you all are doing?” be in touch. Easy to find us.
David, thank you. Because one thing I’ve very much learned here is outreach and awareness—it’s just critical to all of these efforts. And you’re obviously playing a substantial role in helping that to happen.
David Hirsch: Well, you’re very kind. Let’s give a special shout out to Andrew Fushing, a young East Coast dad, for making the introduction.
Joe Lang: Yes. Andrew, Drew as we call him, thank you. And I really very much appreciate that. Be following up. I’m sure there’s people that I’m going to sit back and say, “Gosh, I wish I’d have mentioned them, because they played such a role.” So many have.
My business partners here, who have just gone to bat for me in helping to secure funding for the research. And family people and friends in the East Coast and others. My goodness. Our Mother’s Network, and Candace in Houston who does a fundraiser every year in Houston. And it’s just amazing what’s come together here, David. And like I said, there’s a big plan out there and lots of people helping.
David Hirsch: Yeah. Well, somebody’s got to lead the charge, and we’re thrilled that you and Cynthia have taken up the banner. So if somebody wants to learn more about Jordan’s Guardian Angels, or to contact you, what’s the best way to do that?
Joe Lang: So the easy way is www.jordansguardianangels.org. It has lots of detailed information about the research, about media coverage, about families and children around the world. Lots and lots of data there, and you can get hold of us through there. And we have a very responsive team, including myself, and we’re happy to help.
David Hirsch: Excellent. Joe, thank you for taking the time and many insights. As a reminder, Joe is just one of the individuals who’s part of the Special Fathers Network, a mentoring program for fathers raising children 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 502(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 tech deductible contribution? I would really appreciate your support.
Joe, thanks again.
Joe Lang: David, thank you so much.
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. 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 firstname.lastname@example.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.