By Holden Green
Freelance Breaking News Reporter, The Daily Herald
Data Journalism M.S. Student, Columbia University
PART I
Holden Green spoke with Avery Roberts and Kelly Berger in late August 2025. Roberts and Berger, disability advocates and two people living with a rare, neuro-muscular disease called Congenital Muscular Dystrophy, spoke on a wide range of topics, including their lives, their advocacy work and how they find community. Below is part one of the transcript from the conversation, in which Roberts and Berger talk about their diagnostic journeys, and how they’ve stayed resilient.
This is part one of a two-part series. In the second part, Roberts and Berger talk about some of the goals of their advocacy and where they find joy outside of their work.
The transcript has been edited slightly from the original to improve clarity and remove some non-essential filler words.
H: Hi Avery and Kelly! First can you just introduce yourselves?
K: We’ll start with the letter A, let’s go Avery!
[Laughing]
A: Oh, ok! So, I’m Avery Roberts. I’m a rare disease and disability advocate. I’m located in New York, and Kelly and I both live with an ultra-rare form of Congenital Muscular Dystrophy or CMD. Our subtype is Collagen 6. And so that leaves Kelly and I, and other affected individuals, primarily as mobility device users. Kelly and I are power chair users, that’s our means of mobility and independence. We do a lot of advocacy and work on Capitol Hill, as well as just partnering with various rare disease groups and non-profits. I’m a professional dancer in NYC; you know, living in New York, this city is my second home. I am passionate about authentic disability representation and access in the entertainment industry and media. I was the first wheelchair user to dance on the Radio City Music Hall stage. And yeah, just really passionate about that area. You’ll see throughout the conversation that Kelly and I, our missions definitely align, but then also we have our own passions as well. So, Kelly, I’ll pass it over to you.
K: Alright! Now you say always a lot of the things that I’m about to say, but yeah, I’m Kelly, also a rare disease and disability advocate. As Avery said, I also live with Collagen 6, an ultra-rare form of CMD. I’m a wheelchair user, and I am super passionate about music; I love going to concerts and festivals and things. Something I’m really passionate about is just access issues and just — I should say I’m working to get my ADA certification to be an ADA coordinator, to hopefully better assist some of those venues. And just for public spaces and areas to have better standards to help people like myself be able to get out into the community and to be able to do more things in spaces. Because sometimes, even with the ADA, it’s not enough. There’s still accommodations to be met and, yeah, just always trying to better it for all the other people out there who are also mobility device users and in the disability community as a whole – just improve access. And yeah. I’m from Ohio.
H: Either of you can take this one, but can you explain to someone who doesn’t know very much about it what Collagen 6 is and how it impacts you.
A: I can take that because Kelly hates taking that one.
K: I don’t know, but the medical stuff is like grr, it’s a lot to explain to like the outside community, like “What does that even mean?” So yeah
A: So CMD, Congenital Muscular Dystrophy… I feel like I need to back up. I think a lot of people hear about more common types of Muscular Dystrophy, so like, Duchenne and Spinal Muscular Atrophy or SMA. Another neuro-muscular disease is ALS. A lot of people don’t realize that that kind of falls into the, like, neuro-muscular, muscular dystrophy category in a way. And so Congenital Muscular Dystrophy is right in that category as well, it’s just not one that’s often talked about. Congenital meaning at or soon after birth, so that genetic mutation is always there, it just depends kind of when it shows up. Some genetic mutations show up right from birth, and then some genetic mutations don’t show up until later in life – someone could be living with CMD their whole life, and it wouldn’t present itself until later in life, so it kind of depends. There’s such a spectrum of progression and severity. Kelly and both live with the phenotype – or the presentation – on the more severe and early onset, and so our CMD showed up very early in life. Whether we got diagnosed early on that’s a whole other story, but it showed up earlier. There are 5 primary subtypes of CMD. One of them being Collagen 6. Collagen 6 is technically ultra-rare, but Kelly, I feel like, jump in here, I feel like Collagen 6 is maybe the more prominent and the more, you know, less ultra-rare, than the 5–
K: More common of the rare, yeah.
A: I would say, like, it’s maybe the easiest to diagnose, and maybe that’s why. That’s something that we’re working on is, like, trying to get people diagnosed earlier. And diagnostics have definitely advanced, you know, throughout the years. It’s crazy for Kelly and I to, like, come across a year-old baby and they’re already fully diagnosed, fully genetically confirmed, that is insane to us and also so good to see. The way I like to explain it is that CMD is a rare genetic disorder of the muscles that causes the muscles to break down faster than they can repair or grow. So the main symptom is muscle weakness. It’s really different for everybody. We always say that if you meet one person with CMD they’re probably different than the next person you’ll meet. We all have our commonalities and similarities, but we’re all still so different. Kelly and I are still so different as well. Muscle weakness – respiratory insufficiency is a big one. A lot of us use non-invasive overnight ventilation. But yeah, most of us are mobility device users. More commonly, power wheelchair just because of the muscle weakness and not really having the oomph and the ability to, you know, handle a manual wheelchair. Kelly, am I missing anything?
K: No, I think you covered it pretty beautifully. Yeah, I would say, just as Avery said, it’s just very much a spectrum disorder as to the severity levels. So yeah, people with Col 6 or some people can walk for a time, and some people are very severe and use a lot of mobility devices and equipment to help with their daily activities. A lot of us do also require caregivers to complete our activities of daily living, just to be able to live independently and to help us get through our day.
H: And how have each of your personal journeys been with CMD and to your diagnoses?
K: I can go first now, switch it up! So I was wrongfully diagnosed for most of my life. At age 3, I did a muscle biopsy, which they thought was SMA type 3, which [Avery] mentioned earlier – Spinal Muscular Atrophy type 3. It presents similar to Collagen 6-ish. I’m a bit older so they didn’t really have the data or the info that they do now to know what to look for, so I went most of my life thinking that I had this other neuro-muscular condition. And it took till I was in my late 20s to get a different neurologist who actually cared and wanted to dive deeper into my DNA to really figure it out for me. So they submitted all my stuff to the NIH – the National Institutes of Health – and they were able to get me genetically confirmed with Collagen 6. It took a while, it kind of changed my world thinking that I had this other name of the condition and then they switched it up on me. It kind of made me embrace my community and find my people more, now that I knew that I had CMD. And yeah, it was just really affirming and freeing to finally have that confirmation. But it did take, like I said, a lot of my life to try to get those answers. So, unfortunately, people have long diagnostic journeys. Mine was long, but I’ve heard longer. I’m just grateful that I have those answers now.
A: It’s so funny when you hear Kelly’s story and then you go to mine because it’s definitely a little different, but I think that goes for anyone in the Rare Disease community. So, my mom had a normal pregnancy, and then when I was born I showed signs of a neuro-muscular disease, which put me on the path to how you usually treat a neuro-muscular disease. So like physical therapy, a neurologist, and that kind of stuff. Those types of specialists. They did a muscle biopsy and I went through a bunch of extensive testing. When I was 7 years old, I was able to get genetically confirmed with Collagen 6 CMD. And that was at 7 years old, so it’s a little different than Kelly’s journey, but yeah there’s truly nothing like getting that answer and it just truly puts you on the path to the right specialists and clearly defined precautions that come with living with Collagen 6 and CMD. I was able to walk early on, and so that just goes to show the progression of CMD, and so I would say I transitioned to being a power chair user around 8 or 9 years old, and so it was kind of after that genetic confirmation. But, again, just getting those answers; not having those answers leaves such an unknown, like ‘I don’t know what my future holds’. And so getting those answers and then finding your community is huge and just embracing it, like Kelly said.
H: One thing we’re interested in at Chronic Life Media is resilience strategies. Those in the rare disease community build them up over time, but we’re interested in sharing them out to have as a resource for people in similar situations. For both of you: How did you cope with your somewhat circuitous diagnostic journeys? What were some of the strategies that helped you deal with that uncertainty?
K: Yeah, I think for me it was just accepting that you need to find people that are actually going to care and want to get those answers. I went through some doctors and some neurologists that didn’t really care to really understand that I still had some missing pieces. For me, too, I would do all this bloodwork and then it would get sent out and then I would know nothing. The communication was just not there. So just finding the right care team that really supports you and communicates with you – and gives you updated real-time info – I think that, to me, was helpful. And, like, I don’t want to say hand-holding, but really showing that what I was doing was important and they valued it and, we all celebrated when we finally got those answers. It really was a win for us all. So I think just really finding that specific care team, which sounds easy but it’s not. Not everybody is accommodating, and I had to get a lot of no’s and some not great appointments and a lot of time wasted. But when I did find it, it was really rewarding and celebratory in that space. I would just say stay strong, don’t lose hope, and keep going. Because those no’s will eventually be a yes and maybe you will get that life-changing info.
A: I completely echo what Kelly said. I would just say, like Kelly said, find your people, your care team, and it’s hard. It’s hard to find your care team, especially with how rare and ultra-rare CMD is. There is such a lack of well-versed specialists and clinicians, you know, around the country, around the world, who our community can go to for treatment and care – because there is no treatment or cure for CMD right now. I always tell people that you’re the expert in your journey and, like, don’t let anyone tell you otherwise. Something that Kelly has said before and I take it with me everywhere is “Don’t take ‘no’ for an answer.” That’s a huge one, especially living this life, you know, living with a disability. I think especially when we’re preparing people to speak to legislators or members of congress’ offices people are kind of like “How do you share your story in a minute”? Or something like that. Or they’re really nervous, because obviously it’s an intimidating thing to do. And something that I just always say is “You know your story best. There is no right way to tell it.” And so I think that kind of also goes with resilience.
K: I would also just add that you’re your own best advocate.
A: Yeah.
K: People aren’t going to care if you don’t care, so you have to care to get those answers, to motivate your team, to motivate others. So be your own advocate, be a strong advocate, and don’t give up. Because yeah, you have to fight for it, unfortunately, in a lot of situations.
A: Yeah, and you might think that you’re being really annoying–
K: Oh, be that annoying person!
[Laughing]
A: Like be it! Because that’s the only way you’re going to get by, and that’s the only way you’re going to get your answers and to whatever the end point is.
H: And when and how did you two meet? How has it been working together?
A: Yeah, so Kelly and I met on a virtual event – it was during COVID – I’m sure a lot of people also have that experience. Me met on a virtual CMD community event, and then just found that we both have a lot of the same interests and drive for our community, and that our missions really aligned. And so ever since then we’ve been collaborating on projects and uplifting and amplifying each others’ voices and our work. Kelly and I obviously live pretty far apart – me being in New York and Kelly living in Ohio – but there’s truly nothing like having someone who truly gets it as a friend. [Someone] who’s going along this journey of life; and it’s never a dull moment. I’m sure, you know, other people experience long-distance friendship, they know it’s not always easy, but we make it work, and just, yeah, continuing to do what we’re doing, right Kelly?
K: Yeah, I would just add that we are so in tune together, and that’s why we kind of banded up and realized that, you know, we are two females – and two powerful females – in the disability space. And we want to take up space, we want to have those conversations that are important and not always fun and all those things. But it’s necessary, so we definitely have that same mission and viewpoint, so that’s where we really align.
H: You’ve both mentioned community a lot in the interview, and it’s clear you find that with each other and in your work together. What are some other ways you’ve found community; other events you’ve been to, other things you’ve done virtually or in person, to find that group in the rare disease community and in the CMD community?
K: I think for me it’s that you really have to seek it out, and they’re so hard to find. Even finding someone in your own state, let alone in your neighborhood. So you really have to do some searching. I know I found value in just attending different disability or ADA events locally. For disability pride month, which is July, or Muscular Dystrophy awareness month, which is coming up in September. I also, growing up, attended MDA summer camp, so for me those friendships kind of stem from there. I would attend the weeklong camp in the summer for people with different neuro-muscular conditions, and that was really an amazing experience. I definitely took and carried all those friendships with me that I still hold to this day – going on over 20 years of friendships from that. So that was definitely a staple thing in my lifetime, and yeah, I just pay attention to different organizations, whether virtual events or in-person. Like with advocacy, definitely teaming up on Rare Across America or Everylife that does things. And definitely just networking, connecting there, has helped make some new friendships and connections. So, definitely hard to find, but they’re out there, you’ve just gotta really seek it out.
A: I would say social media is a huge one, especially in the disability and rare disease community. You know, finding those people who have the same passions as you or interests. I think also something that Kelly and I really learned is, like, sending that scary DM or email. It’s hard but what comes of it is incredible and really powerful. And it’s how, you know, we all stay connected. And so I think networking is a huge one as well, whether that be over social media or not, try and find those events but also you know, tap into each other’s networks. Like if you meet one person, maybe they are part of a community or an organization. Or also I think some of the clinicians, like your care team, they might know of some organizations. I know one clinician who is very big in the CMD community; she’s always sending our CMD community members and affected individuals to certain organizations, just because she also knows firsthand the importance of finding your community. And so just tap into all avenues. Like Kelly said, it’s so hard to find. It’s like they’re purposely trying to hide it from you. [Laughing]. You just have to do that digging and, sometimes it’s hard work, but it’s so so worth it in the end.