Achondroplasia advocate Chandler Crews, founder of The Chandler Project, joins us to discuss life with the most common form of skeletal dysplasia. She shares her personal journey, including her decision to undergo limb-lengthening surgery. We also explore emerging treatments and the evolving conversation around advocacy, research and innovation in the achondroplasia community.
Guest:
Chandler Crews, Founder, The Chandler Project, and Orthopedic Care Coordinator & Liaison, Nemours Children’s Hospital, Florida
Host/Producer: Carol Vassar
TRANSCRIPT
Announcer:
Welcome to Well Beyond Medicine, the world’s top-ranked children’s health podcast, produced by Nemours Children’s Health. Subscribe on any platform at nemourswellbeyond.org, or find us on YouTube.
Carol Vassar, host/producer:
Each week, we’ll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor’s office. I’m your host, Carole Vassar. And now that you are here, let’s go.
Achondroplasia is the most common form of skeletal dysplasia, affecting between 1 in 15,000 and 1 in 40,000 births. It’s caused by a genetic mutation in the FGFR3 gene, which slows bone growth, leading to shorter stature and other distinct physical traits. Health concerns can range from sleep apnea and recurring ear infections to lifelong joint pain and spinal stenosis, leading to painful spinal cord compression. While there’s no cure, there are treatments, and even new therapies on the horizon.
Joining us today is Chandler Crews, founder of the Chandler Project, and Orthopedic Care Coordinator and Liaison at Nemours Children’s Hospital, Orlando. Chandler is a powerful and passionate advocate for people like her with achondroplasia and other skeletal dysplasias. We’ll talk with Chandler about her journey, her advocacy, and what’s next, including promising treatments like CNP inhibitors, which work to block a protein that restricts bone growth. We’ll also discuss her decision to undergo limb-lengthening surgery, a personal and hotly debated choice made by just 19.5% of those affected by achondroplasia. Let’s start with her advocacy though, which has its roots in her parents’ experience as they sought information on achondroplasia when she was born in the pre-Google world of 1993. Here’s Chandler Crews.
Chandler Crews, Founder, The Chandler Project:
So when I was born, my parents were just very, “We don’t know what this is. We want to know everything there is to know.” And of course, it was the ’90s, and there wasn’t a lot of internet, let alone research that could be done. And my parents were always just very proactive, and wanting to know everything to give me the best quality of life, and they connected with all the specialists they needed to. And when I was growing up, the only really, I guess you could say the treatment option that was available was a procedure called limb-lengthening. It is very, I would say, controversial within the dwarfism community, pros and cons that people see with it. But for my parents, the reason they were just looking into it was because they were thinking about, “She will have a great quality of life regardless of whatever direction she goes, but having longer arms and having longer legs could help her drive a car easier for herself.” And just get by, I would say more functionally.
And again, I know that can be very controversial, but my parents were wanting what they felt was in my best interest. So we just were constantly researching it, and constantly meeting with a very few specialists that specialized in this procedure, specifically for achondroplasia. There’s still today, not a lot of specialists in the United States specifically that perform this treatment for dwarfism. So when I was 16, I finally decided it was something I wanted to pursue. I was fortunate that my parents never pressured me or tried to pursue me one way or another, going down that route of treatment, but I did decide at 16 that it was what I wanted to do, and it changed everything for me tremendously.
And while I was going through it, I was 16 at that time, it was the 2010s, and so social media was starting to really take off. And I had decided, during that time, that I really wanted to document my experience going through the limb-lengthening treatment. There was a lot of misconceptions surrounding the treatment for years from people who were against it, or didn’t know much about it, and so I thought this was a good opportunity, as a just individual going through it, I can share my experience, and share how I’m feeling in real time. And so I decided to do that.
And at that time, I had no idea that that was turning into patient advocacy. I had no idea. If you had told me when I was a junior in high school that I was going to become a patient advocate, and doing patient advocacy work, I probably would’ve been like, “What even is that?” And since then, I feel like the patient advocacy network in general has very much skyrocketed with all rare diseases and rare conditions.
But to get back, as I was sharing my experience of going through lengthening, I had parents reaching out to me, interested in it for their own children. And then from then on, I started to have parents reach out to me about pharmaceutical treatments for achondroplasia, because during that time while I was going through the lengthening, there was a company that announced that they had discovered a treatment that they were researching for something else, actually really benefited the FGFR3 gene that makes up achondroplasia. And so from then on, I decided to pursue developing a treatment at the time, a clinical trial and research for achondroplasia.
And so that was 2010 to 2011, and now, that company has an FDA-approved treatment on the market for achondroplasia. And it’s just been very exciting to me that so much of the big moments in my life have always correlated with big moments happening in achondroplasia research in general. And so it’s just kind of like all the stars have fallen in line. And I have this voice that I want to use for advocacy work, and I know parents are just very eager for their children to have all these opportunities, and they ultimately get to be the ones to make the decisions.
I’m not a parent myself, but I’m very much, as an individual with achondroplasia, such an advocate to help parents make the decisions they feel is providing them with the resources for their child with achondroplasia, because research and these new pharmaceutical treatments are a very sensitive subject matter within the community as a whole. And so it’s just been very fortunate to be that person to provide families, and even physicians, with this information, because when a pediatrician, if they ever have a child come into their practice with achondroplasia, it’s a 99% chance that child’s probably going to be their only patient with achondroplasia in their local pediatrician office.
And so for a pediatrician to already maybe have a sense of, “Hey, here’s this new research that’s happening.” Or, “Here’s these new treatments that are becoming available.” I feel will put parents at ease, because I know for pediatricians, only going to have one patient with that condition, they may not have the time and the resources to really focus on that one patient’s rare condition. And so to be able to build this community and this network of patients and physicians that I have through my non-profit, I feel like parents and physicians are able to just better understand what’s happening overall with achondroplasia, and other skeletal dysplasias.
Carol Vassar, host/producer:
And I want to talk about those treatments in a moment, but I want to ask you about the limb-lengthening.
Chandler Crews, Founder, The Chandler Project:
Yes.
Carol Vassar, host/producer:
Why is that so controversial in the achondroplasia community?
Chandler Crews, Founder, The Chandler Project:
I think there’s so many different reasons why people see it as controversial, but I would say the number one is probably people thinking you never fully accepted your identity. And for myself personally, I have never seen my having achondroplasia as a big part of who I am, which is so ironic to say, since so much of what I do now is so obviously achondroplasia-focused, but still, I just see it as this condition that I live with, and that I have. I don’t identify as a little person; I identify as just Chandler who has dwarfism. It’s a medical condition that I manage, and will manage for my whole entire life. I have other medical conditions that I have that aren’t associated with achondroplasia that I’m also diagnosed with, and those don’t identify me.
There are a lot of people who really have the pride in their condition, and with their dwarfism. I always say to each their own, but for me, that’s just not what it was for me. And I’m glad that I made the decision when I did to link that at 16, because I was able to live a good chunk of my life at my full adult height, which was 3’10”. And I knew at 16 years old, “Gosh, I truly don’t want to be this height my entire life.” It physically was a struggle for me. It wasn’t a matter of acceptance. As young as I could remember, I accepted my diagnosis of achondroplasia, and that’s all I ever saw it as, just a diagnosis that I live with, not really part of my whole identity.
But I did always say, growing up, and to my parents and to my siblings, I would always say, “Gosh, I feel…” When I’m thinking about myself… And I’m not looking in a mirror, but when I’m thinking of myself inside, I feel like I look like my sister, who didn’t have achondroplasia. On the inside, I truly felt like I wasn’t in the body that I was meant to be in. And also, I was experiencing complications from having the severe bowed legs, so I was on the road to needing surgery anyway. And the surgery to correct bowed legs is pretty much the same as the lengthening. And so I was just like, “I don’t want to do all of that just to straighten the bowed legs when I can also get this much height, and be able to reach the kitchen counter and not need a stool, or not rely on my parents or my siblings to always have to help me.”
And there are many, many, many adults. Definitely, there are more adults living with achondroplasia who didn’t go through lengthening who are living fulfilled, great, independent lives. But for myself personally, I just knew I did not want to live my life at 3’10” for the rest of my life.
Carol Vassar, host/producer:
And how tall are you now, if you don’t mind me asking?
Chandler Crews, Founder, The Chandler Project:
So I’m 4’11” now, but that is not… I always had to clarify that’s not with one lengthening surgery. I had two separate individual… Three technically, because I also lengthened my arms. So after my first lengthening, I was only 4’5″. So I went from 3’10” to a little over 4’5″, actually, but not quite 4’6″. And so at that point, when I was going through that, that was the only one I was planning for, but then I decided, “Gosh, I know I can get another six inches in height.” And decided to go through it again. And now I’m 4’11”. As soon as I hit that 4’11” mark, and seeing the world differently, and being able to do things differently, I was just like, “Gosh, this is the body that I was supposed to be in.”
And again, it’s very much a personal decision, and I always tell people, “Do your research. Find the physicians who you’re going to want to guide your care for so long, because they’re going to become your team.” And so it’s just very important to do that. And so I don’t, for one bit, regret going through the lengthening, and I’ve been able to help parents navigate when their children start asking questions about this particular procedure. Because they too want their child to be the one making the decision, but it’s also… It’s a lot for a child to make that decision. And so a lot of times, parents are like, “Don’t want them to resent me for making this decision for them, but then I don’t want them to resent me for not making that decision for them.” But I don’t regret it when I did.
Carol Vassar, host/producer:
You talked about some of the misconceptions about achondroplasia. What are the misconceptions that you have found in your personal experience or in your advocacy work?
Chandler Crews, Founder, The Chandler Project:
I would say, just a lot of misconceptions in general as an individual with achondroplasia. Growing up, I always knew I had achondroplasia, but of course, when you’re a kid, you can… My parents always made me know as much as I could, or understand about my condition, but I knew there were certain things I couldn’t do, because of the narrowing of my frame and magnum. I couldn’t jump on trampolines, which I know a lot of doctors today say now, “No kids should be jumping on trampolines.”
Carol Vassar, host/producer:
But the ’90s was a different time.
Chandler Crews, Founder, The Chandler Project:
Right.
Carol Vassar, host/producer:
When I raised my kids.
Chandler Crews, Founder, The Chandler Project:
It’s a different time. The ’90s and the early 2000s was a much different time. And when I would tell my friends, “I can’t, because I have achondroplasia.” They, I think, just thought, “Oh, it’s because Chandler’s so short.” Obviously, not knowing it’s really because of my spine, it’s because of my spinal cord, it’s because I have spinal stenosis, I have frame and magnum stenosis.
So many children have ear tubes growing up, but those with achondroplasia, it’s inevitable they’re going to have many ear tube surgeries. I had so many ear tubes due to how the bones in our ears develop. And that’s another thing, we’re constantly wanting to make sure we have our hearing tests. We can have trouble breathing with sleep apnea. There’s just a lot of internal, I would say complications that many are at risk for. I was born and raised in Arkansas, and was very fortunate that I had a neurologist who was very specialized in skeletal dysplasia, who lived just two hours away from me. Not everyone is that fortunate, though. But of course, again, this was a different time; it was the ’90s, the early 2000s. And by the time that I was turning 30, and it’s finally at a time again where I was like, “Well, I need to start being more proactive with taking care of my spine, and having it monitored more closely.” As most adults with achondroplasia do.
My doctor retired, and so I was on the search for a new physician, and I knew one of the physicians who was very world-renowned at Nemours, Dr. William Mackenzie. I reached out to him. I have known him for years through just external projects that we’ve worked on together. I did find out that the team would see me until 35. But then he retired, and so now his son, who took over his practice, and their neurologist, Dr. Campbell, both follow my spine.
Carol Vassar, host/producer:
Though she’s from Arkansas, when we spoke with Chandler, she was living in Maryland, not far from Nemours Children’s Hospital, Delaware. The physician who performed all of her limb-lengthening surgeries began practicing at Nemours Children’s Hospital, Orlando, which is where she now works.
Chandler Crews, Founder, The Chandler Project:
Nemours is who so many specialists have always relied on. Specialists who are in other states, because they know Nemours is kind of the place to go, a lot of times for skeletal or achondroplasia care. And so it’s just been kind of full circle.
And now I’m here today on this podcast, and it’s just been very exciting, and I’m very proactive in talking about the misconceptions around achondroplasia. There is so much more internally that goes on, and so hopefully the new treatment that’s currently on the market, and all of these other treatments that are currently in clinical trials, they’ll be on the market in the next several years or so, and each one kind of working a little bit differently. There’s going to be so many more opportunities for better patient care, in a sense that hopefully these treatments will help to prevent children from really needing a spine surgery so early on, or needing a shot for hydrocephalus, or needing decompression surgery, which are all very common treatments that those with achondroplasia will have. But to have these treatments that may help to prevent those surgeries is just very exciting.
Carol Vassar, host/producer:
You went public, very public-
Chandler Crews, Founder, The Chandler Project:
Yes.
Carol Vassar, host/producer:
… with your stories. How has that been to be out on social media, to be very public with all of this, the limb-lengthening, and about your advocacy? Seemingly a star in the achondroplasia community, from what I’ve been seeing. What’s that like, and why have you done that?
Chandler Crews, Founder, The Chandler Project:
So I started that when I was 16, and at that time, I don’t think I ever expected it to get to where it got. Because I was 16, I was on social media, I was posting how I would if I was texting my friends or something, that’s how I was posting, and I still wanted to share my experience, still not quite knowing what it would turn into. It just kept on snowballing to bigger and bigger and bigger.
And while I was sharing my experience of going through the surgeries, I realized once I had parents starting to private message me and ask me, “No, I see you on the board, but I’m scared to comment publicly, because I don’t want people to know that I’m interested in this.” Because it is so controversial. I realized, “Oh, there are so many people who feel like they need to be quiet about what they want for their children, because they’re scared of the controversy and backlash they may receive.” And so just kept on being so much more open and vocal about my experience.
And I was going back to say, “I’m glad I did my surgery when I did.” Because had I done it years earlier, I know it wouldn’t have been the same, having the opportunity to share it on social media like I was able to in 2010, and then it just turned from there. And at that time, I thought, “Oh, I was so old and mature.” And I know what I’m doing at 17 by posting on social media and doing this. Like, “I know what I’m doing.” And then I did get a lot of slack. There was a lot of negative comments and a lot of pushback.
I did receive so much pushback from just people from all over. And there were days where I was just like… I didn’t think anything of it, because again, I was a moody 17-year-old, being like, “I don’t care. Why are these people so whatever?” Because at the end of the day, if five people are telling me what I’m doing is wrong, but I’m having one parent message me saying, “Thank you for sharing this experience, it’s helping me.” That’s what I care about, is that one person. And still, there were so many points where, I would say, it really did get so loud, of people just being so negative, and so vocal, and so against what I was standing for. I pushed through it, and I’ve really developed a thick skin. Yes, there are definitely days where I have breakdowns, and I’m like, “Oh my gosh, why are these people just so upset about what someone else is doing for themselves?” I do care so much about the advocacy work and everything, but at the end of the day, you sometimes also just have to not care what people say.
Carol Vassar, host/producer:
It’s perseverance.
Chandler Crews, Founder, The Chandler Project:
Right. You just have to not care. There’s going to always be people who are so against everything that you stand for, and you have to not care, and it’s hard sometimes. Looking back, I remember having moments, going through my treatments, and I was 17, and I had all these negative comments. Some would hurt, and then I would look back and realize so many of the negative comments were from full-grown adults in their 30s and 40s. And looking back, I felt like I was the one in the wrong because I was doing what I… Whatever. But then you look back, “Oh my gosh, how can a 40-year-old be taking their time to comment on a 17-year-old’s social media post, telling them how wrong they are for…”
Carol Vassar, host/producer:
You were the mature one.
Chandler Crews, Founder, The Chandler Project:
Exactly. Of course, at that time, I didn’t think anything of it, because I was 17, and I was just like, “Whatever.” But looking back, all right, I was definitely had the higher hand in that, because I was just doing what I felt was in my best interest, and clearly helping other families, because I had so many people reaching out to me wanting to know more, and that turned into wanting to know more. Because lengthening was so controversial, of course, pharmaceutical treatments were going to be even more controversial, and so they felt like I was a shoulder that they could lean on. And so from then, that just really started my advocacy work, and wanting to be that person that’s so proactive in providing all these parents with the information they were just desperately searching for. And it led me to wanting to start my own 501(c)(3), my own patient advocacy organization, and so it’s just gone on from there.
I host an annual conference that brings together physicians, and researchers, and families in a very safe space to talk about all of this, because it’s very exciting, and it helps… When the parents, and even patients, are able to hear from the physicians, and hear from the researchers who are the ones developing, they’re able to be put at ease, and be like, “Oh gosh, now I understand this.” Because they’re only going to understand so much of what’s posted in press releases, and what’s posted online in papers. And for them to be able to upfront ask these physicians who are world-renowned in skeletal dysplasia, and ask these researchers who are day in and day out going to work each day researching achondroplasia, and trying to find a treatment for their child. I mean, it’s so incredible for these parents to be able to have that opportunity.
And a big part of it is, they’re able to tell the researchers, “Well, these are the endpoints that we would like to see for a treatment for my child. If I had a magic medicine that I could give my child, these are what I would want.” And then those researchers are able to go and research that, and take from that, and hopefully make that an endpoint in the treatments that they’re developing.
Carol Vassar, host/producer:
It sounds like you are supporting parents, you’re providing advocacy, you’re interfacing with researchers, you’re doing it all through the Chandler Project, which is your 501(c)(3). Before we finish up today, I do want to get to what the new research is, what the new treatments look like, what the new pharmaceuticals might be for achondroplasia.
Chandler Crews, Founder, The Chandler Project:
So there’s one FDA-approved treatment right now, and it’s called Voxzogo. It comes from a company called BioMarin, and it is for children from birth to when growth plates close. And I am seeing so many families who are having very promising results. That treatment specifically is a daily injection. And then other treatments that are on the rise are in clinical trials right now. There’s one from a company called BridgeBio, but they have a subsidiary company called QED Therapeutics. And so it’s QED Therapeutics, they are developing an oral medication called infigratinib. I think about Voxzogo and all of these upcoming treatments, is they all will work a little differently, and they will all target FGFR3 a little bit differently, or target their CNT inhibitor. I should disclose, I’m not a geneticist, of course, so anytime-
Carol Vassar, host/producer:
And you’re also not representing the companies.
Chandler Crews, Founder, The Chandler Project:
Right. I’m not representing any pharmaceutical companies. But I always like to say, I’m so much of an advocate, and I know so much of these, but sometimes when it gets too-
Carol Vassar, host/producer:
In the weeds.
Chandler Crews, Founder, The Chandler Project:
… science talking, science language, I’m like, “Some of it goes over my head.” But targets FGFR3, and a lot of the CNP inhibitors. And then there’s a company called Ascendis Pharma, they are developing right now what will be a weekly injection, so not a daily injection, but a weekly injection. And then there’s a company called Tyra Biosciences, who is also developing an oral medication. And all of those clinical trials are in the U.S.
This is all within the past… I’ve been doing this conference now for six years, but at the time, when I had my first conference, it was only two companies, and now I’ve had all of these companies come and present. And so to think about 10 years ago, there were no companies other than BioMarin that was researching, there were no companies in this stage. And now parents who have children born with achondroplasia today have more opportunities for their child than my parents ever did. And so I just think it’s very exciting, and to be in the middle of all of that, and to help navigate these families if they want to pursue enrolling in clinical trials, or pursue lengthening treatment or anything, I really just like being able to be that hand that they can hold through their journey. I want to always be the person that my parents wish they had had when I was diagnosed and born. I wish they would’ve had the person that I am for so many of these families.
Carol Vassar, host/producer:
Chandler Crews is the founder of the Chandler Project, and Orthopedic Care Coordinator and Liaison at Nemours Children’s Hospital, Orlando.
MUSIC:
Well Beyond Medicine.
Carol Vassar, host/producer:
Thank you, Chandler, for sharing your story and so much great information about achondroplasia treatments, now and in the future. And of course, thank you for listening.
From personal stories like Chandler’s to the latest in healthcare technology, safety, and security, if it affects children, we want to know about it and share that knowledge with you. It’s easy to reach us with your episode ideas; just visit nemourswellbeyond.org and leave us a voicemail. It’s our podcast website, so there is ample opportunity to listen to previous episodes, leave reviews, subscribe to the podcast, subscribe to our monthly e-newsletters, there is so much. It’s nemourswellbeyond.org. You can also send us an email at [email protected]. That is, again, [email protected].
Don’t forget, the podcast is also available on your favorite podcast app, and on the Nemours YouTube channel. Our production team for this episode includes Cheryl Munn, Susan Masucci, Lauren Teta, and Steve Savino. Join us next time as we examine healthcare security and IT infrastructure through the lens of our friends at Dayton Children’s. I’m Carol Vassar. Until then, remember, we can change children’s health for good, well beyond medicine.
