Title:
Avery Roberts & Kelly Berger | CMD Advocacy Warriors

Subtitle:
Beyond Diagnoses: Congenital Muscular Dystrophy from Capitol Hill to Center Stage

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.

Let’s go.

Welcome back to Pushing Forward with Alycia. I am Alycia and I wanna start this podcast episode today with a question. What happens when advocacy meets artistry and rare disease warriors refuse to stay silent? I think bold things happen. Unstoppable actions. I’m so excited to introduce our guests. First, we connected over a booking request to come and speak at their event that’s happening on August 2nd. Coming soon. We’re gonna talk about that. And then we made fast friends. I’m so excited to introduce Avery Roberts. She is a fierce, rare disease and disability advocate. A speaker, a professional dancer who lives with congenital muscular dystrophy, CMD.

She’s gone from Capitol Hill to New York’s biggest stages, and she’s challenging stereotypes and championing accessibility, so it’s done right. Love that. And meet Kelly Berger. She’s a dynamic advocate from Cincinnati, Ohio, whose CMD journey fuels her passion for mentorship, public advocacy, accessible travel.

And she’s been, with over 40 states, explored in her adaptive van and multiple national awards under her belt. Kelly is proof that inclusion and independence can go hand in hand. Yes, they can. I love that. Welcome to the show, friends and beautiful ladies, I’m so excited that we’re having this conversation.

Thank you for your time today.

Avery Roberts: Thanks for having us. We’re excited.

Kelly Berger: Thank you.

Alycia Anderson: So excited. Okay, so can we start with the heart of your story? So how did your journeys in advocacy begin and what fuels that passion today? Who wants to take that first?

Kelly Berger: I can go first. So I really didn’t dive into, more advocacy in my journey ’til a couple years ago, honestly, just, hearing from Avery and with all she’s done. It kind of just pushed me to get outta my comfort zone and go and fight for the things that our community needs. And, I just caught the advocacy bug and, wanted to keep doing more and more.

So I started out virtually and then worked up to in-person at the state level and then took it to the federal level. Last year at Rare Disease Week. So, at Capitol Hill, that was really moving and so empowering and I haven’t stopped now. And our political climate is, at a time where we need more advocates.

So it’s, just really important to keep speaking up and using our voices for good.

Alycia Anderson: I love that you just brought up our political climate, because I agree with you that we need more advocacy than ever right now, and it sounds like it’s fueling you rather than fearing you. Can you talk about that for a moment?

Kelly Berger: Yeah, for sure. I know right now is scary times. I am scared, but definitely I think, to keep pushing myself. I actually attended my first protest a couple weeks ago and that was just so moving and, so powerful. And I just think it’s really important for us all to kind of unite and band together to really stick up for the disability community’s needs, ’cause right now that’s being questioned and we really need to keep fighting instead of going, backwards. And to keep pushing forward, obviously. Little promo there for ya.

Alycia Anderson: Love it.

Kelly Berger: Right? Pushing forward. But, yeah, that’s where I’m at right now.

Alycia Anderson: Love it. Avery, what about you?

Avery Roberts: I would say the heart of my story is kind of similar to Kelly’s. I started advocacy on Capitol Hill, I would say around five years ago now. And I think I really just realized, and had a true awakening that, if I am not happy with how our world meets or attempts to meet our needs, then the only way that we’re gonna see real change is if we raise our voices. And so then I started, introing our legislators at the federal and state levels, especially on Capitol Hill, to ensure that public policy meets the needs of our rare disease community. Just ’cause I think I’ve learned the power of lived experience. And so, if you haven’t really, come in contact with disability or if you haven’t actually lived our life, our lifestyle and navigated our journeys, then you probably don’t really know what we need. And so, that’s kind of what is, still sparking my passion as well, just our lived experiences in all areas of life.

And so, that’s kind of what drives me as well as just all the other experiences that I’ve heard, within our, large community. That’s really what drives my passion.

Alycia Anderson: I love that. Can we talk about your community and congenital muscular dystrophy a little bit? How has living with CMD shape your voices and your vision and your advocacy? Can you speak to kind of how it shows up, the community and the advocacy there?

Avery Roberts: Yeah, Kelly, I know that you get kind of uncomfortable speaking about CMD, so just how to put it into words. and

Kelly Berger: The sciencey stuff is not my vibe.

Avery Roberts: The sciencey stuff. So, congenital muscular dystrophy, or CMD, is a rare genetic disorder of the muscles that causes them to break down faster than they can repair or grow. And so, that’s kind of the main characteristic and symptom of CMD, which leaves our community members, as well as Kelly and I, primarily as mobility device users.

Kelly and I both utilize power wheelchairs, as our main means and sources of mobility. So I would say that’s the major characteristic of CMD, congenital meaning that it, appears at or soon after birth. All of our community members are different. Basically, we all can be similar in certain ways, but are also different at the same time. Our severity level is different,

our progression is different and appears at different times. Some of our symptoms might be different. Another prominent characteristic is respiratory insufficiency. And so a lot of our community members utilize some kind of breathing device, whether it be at night, or during the day.

It’s non-invasive equipment. What else in terms of CMD? I think a lot of people hear about Duchenne muscular dystrophy or spinal muscular atrophy, and it’s actually our community members are often, misdiagnosed with SMA before they reach their official CMD diagnosis.

And so that just kind of shows how similar they are. But congenital muscular dystrophy is not often brought up in terms of, newborn screening or, just when we’re diving into diagnostics and stuff. We’re rare, but we’re, we’re not so rare. We’re all around the globe.

Kelly and I live with an ultra rare form of CMD called Collagen Six related dystrophy, or COL6. So there are five primary subtypes of CMD. Kelly, did I miss anything?

Kelly Berger: Just to fit it all together. Yeah. So for us, we’re more in that space of it would be ultra rare. So the other near muscular dystrophies, there’s hundreds of them. At this point, we’re not really often. Often overlooked or put in the background. So, we’re trying to bridge that gap of getting a better diagnostic journey to get diagnosed with CMD so that we have a stronger community to, band together and, meet our community’s needs.

Alycia Anderson: Amazing. I mean, thank you for sharing that. And you’re ultra rare, but ultra fabulous too. I’m assuming all the advocacy that’s going on right now with Medicaid and all the things that are on the table right now with cuts is affecting your community pretty heavily.

Do you wanna speak to that at all? And you don’t have to, but if you have anything to say there, I would love to know.

Avery Roberts: I would say, I mean, it’s scary times. Kelly and I are terrified to say the least. To put some context around it, Medicaid is how our community members, as well as Kelly and I, receive healthcare coverage, at-home care assistance. It’s how we pay for our costly medical equipment, as well as medications, if that’s applicable. And so it’s really a lifeline for our community. And so seeing every single day, what’s going on in our rapidly evolving political environment, it’s dehumanizing and it’s scary. And, just to think about how they are looking to basically erase and eliminate us and our community. It’s hard I feel like we’ve said before, it’s important and pivotal that we raise our voices now more than ever.

Alycia Anderson: And share the human stories here. You know, that’s the work that you’re doing and humanizing this stuff is so important. So I really appreciate you talking through that a little bit. Kelly, do you have anything to add?

Kelly Berger: Oh no. I would just say I know, too, just the timing of all this going down on the cusp of Disability Pride Month, as well as the anniversary of ADA, is kinda like a slap in the face. We don’t wanna be celebrated. We’re going backwards instead of in forward

Alycia Anderson: Yes.

Kelly Berger: motion.

So, yeah, it’s all sad and I hope that we make a change or something happens drastically that way we’re not, in that state. But, I guess we’ll see what happens here. But we definitely all need to stay united in that fight for our disability community.

Alycia Anderson: A hundred percent.

Can we talk about something fun?

Avery Roberts: Of course.

Alycia Anderson: At least I think it sounds fun and interesting. Avery, let’s start with you. So you’ve danced at Radio City Music Hall. I’m obsessed with this. What was that moment like as a wheelchair user? Can you talk a little bit about breaking barriers in performance and art?

Avery Roberts: Sure. So, outside of the work I do with Kelly, I’m very passionate about, disability representation and inclusion, Denver and, our entertainment industry and media. And that kind of also comes from my lived experiences. And so, unfortunately, I’ve had some different experiences, as I’m sure other people in the industry, whether you’re an actor or a dancer or a singer. Whether you’re behind the camera or in front of the camera or on stage or backstage has experience. And so there’s a lack of knowledge and access in our industry. Kelly and I have grown up not seeing ourselves reflected in what we watched on TV or in the children’s books that we read.

And so, that’s kind of what I’m striving for the authenticity there, so that people know that their narrative is worthy of being reflected in any piece of art, really. And so, I am really passionate about increasing that access, increasing that support, ’cause it even goes back to accessibility in dressing rooms or how to do a quick change effectively and efficiently. It’s the little things that I’ve learned through my lived experiences. And so, that’s kind of what has really sparked my passion in this space. But I’m really grateful to have the opportunity to combine my love of dance with breaking down those barriers, and to be leading the charge in this way.

‘Cause I’m not the only one, I can think of a couple, in the industry, who are kind of leading this change right now. And so, you mentioned, I was the first wheelchair user to, dance on the great stage of Radio City Music Hall, and I was so fortunate to have that opportunity and I’m still so grateful for it, but I shouldn’t have had to be the first.

I think about that a lot. But it was truly such a surreal moment, not only for me and my loved ones and all my family and friends that were able to, to make it out for that, incredible moment, but as well as just our community. The fact that around, I think it was 5K or 6K, people were able to see the first wheelchair user.

I hope that every single one of those people walked away thinking that. Having a different perspective on who can dance, because you can dance no matter your ability and whatever. And so, something that one of my choreographers said, at a talk back that we were doing once was that disability is only relevant when it has to be.

And so I think that’s kinda what I live by, not only in the industry, but just, in all facets of life as well.

Alycia Anderson: Two takeaways. Number one, I love that you’re focusing on the performance, but also the details, right? Anytime I’ve ever performed. Outside of speaking, there’s always been this stress thing about how am I gonna change? Am I gonna be private? Who’s gonna see me? What is gonna happen?

Avery Roberts: Exactly.

Alycia Anderson: You know? So those little things that cause us a lot of anxiety in between the performance is such a thing, and so I love it that you’re focused on the details of getting to

Avery Roberts: right

Alycia Anderson: the point of performance where you get to shine, but like how do you get on stage? How do you change,

Avery Roberts: Exactly.

Alycia Anderson: how do you show up? How does the mic fit?

Like all those things. So I love that. And number two, I’d love even more what you said about you were the first, and that’s awesome, but we shouldn’t be having to celebrate the first. Like this should just be. And Stephaello, I don’t know if you follow her, but she was the first makeup artist quadriplegic to do an ALTA ad. And she says the same thing, I was the first and it went viral and all these things, but I want things to not go viral. I want these movements to be just so typical they don’t go viral. It’s not a thing and just part of life. So I love that you have that theory behind you being the first two.

‘Cause I think that’s a really important point.

But congratulations on being the first two.

Avery Roberts: Thank you.

Alycia Anderson: So many, things come from being the first two. It’s an opportunity to, practice leading.

Avery Roberts: To grow.

Alycia Anderson: Be a leader, and just all of that. So anyways, love that story.

Congratulations. Okay, Kelly, I’m gonna switch to you for something fun too. You’ve traveled 40 states. I love travel, accessibility, all of the things. And for you, what role has travel, adventure, independence, empowerment through those experiences? How has that transcended into your life and what has it meant?

What does it mean? what does it give you? What does it give others?

Kelly Berger: It’s just always been a passion of mine and just explore and find new places and, just be out and about in society and just have those same type of experiences that anyone would have. So just, even though it’s not always easy, each hotel is a gamble and the room you book is not always the room you get.

It’s not to your needs. There’s so many things and variables when it comes to travel, to take in mind, but for me it’s worth it. I love to just, keep getting out there and, keep exploring. So I definitely just learning from that too. And, being out and, teaching others what it’s like, that you can travel, and do all these things no matter what you live with and your experiences are.

So, yeah, just for me, I just love that sense of adventure. That’s really what,

Alycia Anderson: What’s been your favorite? What has been your top?

Kelly Berger: I know it’s hard, so, I’ve always been a lover of the beach and tropical. So I would say a Florida or a California or the good beach and warm and sunny and, I love a good boardwalk, a good beach setting. That’s probably my favorites, but I also like the bigger cities.

It’s just, it’s boring. All the different architecture and, different museums and things like that too. So, I’m pretty happy anywhere. I don’t really like the cold, so I’m not a mountain or snow person. That’s not really my vibe. But, I can really make the most and go anywhere. I just like to travel.

Alycia Anderson: I love it. I lived in the snow, when I was young in my twenties, and I was like, I can do anything. And it was the hardest thing living in the snow,

Kelly Berger: Right? The struggle. Yeah.

Alycia Anderson: Yeah, and I lived in an apartment building and I would have to shovel feet of snow and people would be outside on their balconies kind of watching me.

Nobody would help, and I’m just I’m never gonna get through this

Kelly Berger: Oh.

Alycia Anderson: so hard. I’d climb on the roof of my car to scrape the windshield. I mean, I did. I really made that hard. Why wouldn’t I ask for him? I never wanted to ask for help when I was younger.

I just didn’t want to be that person. And I’m kind of ashamed to say that now with the work that I do, but it took me a long time to understand that asking for help isn’t showing weakness. It’s actually more of a strength. So that was back in my day. One time, it snowed so heavy. There was a long driveway in the front of my apartment building and I, couldn’t shovel, I didn’t have my shovel with me, all of the things. So I just hit the gas, went as far as I could get. My car stopped and then I crawled,

Avery Roberts: Oh my God.

Alycia Anderson: I clearly crawled in the snow to my front door and left my wheelchair in the car.

Crazy.

Kelly Berger: Gosh.

Alycia Anderson: That’s my story to the kids I had to crawl through the snow to get home one day, anyway. Let’s talk about mentorship. I know you work doing a lot of mentorship, within your community, I’m assuming within some of your young community. Can you talk about some of that work and its impact that you’ve seen?

Kelly Berger: Yeah, for sure. So me and Avery love to, kind of the new generation, the younger adults. We love to kind of help be their guides and be just a friend, a mentor to them, to help them navigate that journey, and steer them towards resources and things that they may not know about that we didn’t have growing up.

We’re kind of going at it finally. And so we definitely wanna make those life transitions easier for those that are going through it. So, that’s just a passion that we love to help in those cases.

Alycia Anderson: So, so huge. I didn’t have many resources growing up either.

Kelly Berger: Right. You’re coming out blind and it’s exhausting to try to dig for all the things that you wish you had.

So, we just try to put that at the forefront and help make it easier for them.

Alycia Anderson: Can we talk a little about Cure CMD, the work that you do there? I’m assuming a lot of the resources come from your organization. Let’s talk about the conference a little bit and how we can get involved.

Avery Roberts: Yeah, so, Cure CMD is one of the many non-profits that Kelly and I partner with. And basically we work a lot on the community side, like you had said, and provide the in spearhead, the educational, and informative content like Kelly was referencing in terms of the resources. So we have a young adult resource page on the Cure CMD website, but we’re having Alycia to come speak to our young adult program at our upcoming Congenital Muscle Disease, Scientific and Family SIPAIM Conference. It is gonna be hosted in Philly at the beginning of August. But it’s a four day conference where we bring together all stakeholders, not only in the CMD community, but as well as, the myopathy community and the titanopathy community.

So we partner with two other patient advocacy organizations, who are all in the congenital muscle disease space. And it’s a time where we can get the latest updates on research and care from our clinicians and researchers.

CMD is one of the many patient, advocacy nonprofits that Kelly and I partner with. And basically, we spare out a lot of the community side. And so, we provide educational and informative content to our community.

Where we can bring our unique angle as CMD affected individuals to all that we do, as well as adapt to other people’s perspectives and experiences in the community. That’s kind of what Kelly was hinting at with the resources that we provide. We have a young adult resource page on our website.

Also, we founded and run the young adult program and the young adult programming at our upcoming Congenital Muscle Disease, Scientific and Family SIPAIM Conference where, Alycia, you’re gonna come and speak to our group,

Alycia Anderson: Yay.

Avery Roberts: which we’re really excited about. The SIPAIM is gonna be in Philly, in the beginning of August.

Basically, it brings together over 500 stakeholders and the congenital muscular dystrophy, myopathy, and titanopathy communities. So we partner with, two other patient advocacy groups, who are also in the congenital muscle disease space. Basically, it’s just a time for people to learn, connect, and share. Our community is able to learn of the latest research updates, in each subtype, in each, group, in each community, as well as connect with people in-person. Since our community is global, it’s really the only time that we can get our community together in-person.

So it’s really a time that a lot of people look forward to. And it’s a highly anticipated event just because of that. It’s also a time for our clinicians all around the world of researchers to be able to meet with the community that they’re serving, with the affected individuals that they’re serving, ’cause they’re up to date, there is no cure treatment for CMD.

And so, this is the time for them to actually speak and meet with the people who they’re serving, to really get a sense for what our affected individuals want in terms of upcoming treatments and cure. We’re really excited to have you, Alycia, to speak to our young adult group.

Yeah, that’s a little bit more on SIPAIM.

Alycia Anderson: I’m so excited. I wish I could be there in-person one of these days. Is there a virtual option or is it just in-person?

Avery Roberts: The sessions will be recorded. We are gonna have a virtual event in a couple months

Alycia Anderson: Hybrid.

Avery Roberts: After SIPAIM, but more info for that soon.

Alycia Anderson: Awesome.

Avery Roberts: Stay tuned.

Alycia Anderson: I think I wanna ask you a question that I wasn’t planning on because I love it that all of our disabilities on this meeting today, this interview are congenital, and I’m not in a room very often that everybody’s congenital disability. Can you talk to our community that’s listening about the ones that are growing up young with a disability?

How did you get from growing up young with a disability to being in leadership roles, like how do you get there from a confidence standpoint?

Kelly Berger: I think that comes with time. I feel like acceptance is a really big thing. Then coming to terms with your disability if you live with it since birth. I think that we all process it in different ways and kind of gaining that confidence like you said earlier, asking for help, that’s a big step. I think it just really stems from your being comfortable and being self-aware and accepting. And I think too, once you live it, you understand it more as you continue to grow in age. And I think from there, like me and Avery, whether you use your voice or whether you’re more public. I think that just comes with time.

Some people are more quiet and shy, and that’s okay too. But I think it really stems from just being comfortable in owning your disability and knowing that’s kind of the life and choosing to use it as a positive or a negative. So, it really is all about outlook too. How you perceive yourself and where that goes. But yeah, I think anybody can step up and be a leader and it takes time. I know for Avery, she’s younger and me it took longer, but we’re both there and it’s okay. It happens for everyone differently.

Alycia Anderson: You have any advice there, Avery?

Avery Roberts: I would just say, you ultimately define how disability affects you, how disability limits you in some cases. Like Kelly was saying, I feel like I would just echo. Time, acceptance. I think everybody’s journey and path is different, and so don’t think that you need to follow someone else’s journey.

I think Kelly and I especially have had to, and I’m sure it’s the same for you, Alycia, have had to create our own path. And so we hope that the younger generations and those who come after us, can then use our path to get into leadership roles and stuff. I think networking is huge. Kelly and I love connecting with other people. If you’re listening to this, please reach out. We love connecting with other people, traveling along a similar journey as us and just chatting and sharing experiences, as well as how can we all, collaborate to further the fight and back each other up? You don’t have to live with a disability to be an ally with our community.

That’s something that Kelly and I try to really encourage and push. I would just say follow your own journey and that’s only your journey.

Alycia Anderson: I love it. I love it. Powerful. So we’re gonna leave all of the information for so much in our show notes, for the CMD website, for the SIPAIM 2025 conference, how to get tickets, how to show up, how to support, how to donate, how to get involved, how to follow you on social media, all of the things. Did we miss anything?

Avery Roberts: No, I don’t think so

Alycia Anderson: I think we had a great conversation. Beautiful conversation. Okay, you’re gonna have to come back on. I think there’s a lot more that we could have talked about, honestly.

Kelly Berger: Part two, part two.

Alycia Anderson: Part two. I love it. Coming soon. So we have made it to the pushing forward moment. Can you send our community off with a little motivation, from your end?

Who wants to go first? Little mantra, something. No pressure.

Kelly Berger: Okay, I’ll go. So my pushing forward moment would be, just know that you’re not alone in your journey. A lot of us are out there living that. And, I would say, don’t stop fighting. It’s gonna be hard. It’s not easy. Don’t let anybody diminish your needs. Just don’t stop fighting.

Alycia Anderson: I love that

Avery Roberts: Love that Kelly. Oh my God.

Alycia Anderson: tough act to follow

Avery Roberts: How am I gonna follow that? I would say, something that Kelly has said before is, don’t take no for an answer. And so I’ve tried to really lead with that. Very powerful, Kelly. I always say in terms of people who are outside of the disability community, meet me outside of the box. And that, inclusivity is an invitation. Society kind of tends to put our disability community in this predefined box, so I wanna be met outside of the box. And I want disability to be normalized and our community to be fully included, fully accepted, not separated in our society. For people within the disability community, I would say don’t stop fighting. Find your community, find the people who support you and who uplift you. I think that’s where it all stems from, especially coming together as a collective.

Alycia Anderson: I love it. Don’t stop fighting and meet me outside of the box. That could be a title to your book one day. That’s powerful. That’s a great statement. Ladies, thank you so much, so happy that you’re in my life and that we’re gonna be spending time together on August 2nd and hopefully many people that are listening will also be grabbing their tickets now.

Thank you so much for your time today. This has been a great conversation.

Avery Roberts: Thank you for having us.

Alycia Anderson: And thank you to our Pushing Forward community for joining us on another episode. If you love this episode and wanna be a great ally and you wanna think outside of the box, please share it, subscribe, and help us continue to grow our community. This has been Avery, Kelly, and Alycia, and this has been Pushing Forward with the three of us, and that is literally how we roll on this podcast. We will see you next time.