Avery Roberts & Kelly Berger - Striving for Rare Inclusion

Congenital Muscular Dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts are making their voices heard as they speak with Katie Corbett and Mandeep Ladhar. Together they hope to tackle misconceptions surrounding disability and give a loud voice to the, often forgotten, rare disease community.

CMD is a rare genetic muscle disorder causing them to break down faster than they can repair or grow, which leaves Berger and Roberts as wheelchair users relying on them as their main source of mobility and independence.

The duo got together in New York City, something that’s few and far between considering there’s a good 10-hour distance between the two. Berger resides in Ohio, while Roberts is just outside the NYC area.

While together, it was pertinent that they shot some powerful photographs as they navigated the city in their power wheelchairs, illustrating that mobility doesn’t halt their existence in the outside world.

Lack of accessibility isn’t a deterrent for either Berger or Roberts to be active participants in today’s society. Curbs, stairs, and/or other barriers aren't stopping them from pursuing an active and social lifestyle. “We are here, we are exhausted of being excluded and it’s our time to shine, no matter what obstacles we have to overcome,” Berger says.

When the friends aren’t turning heads with their power wheelchairs around the city, they support other young adults in the rare neuromuscular disease space. Both Berger and Roberts work remotely as a part of the Community Outreach Team for the non-profit organization, Cure CMD. They host a bi-monthly virtual Zoom Webinar Series together providing educational content and offering a unique angle as they are both affected by the same CMD subtype, Collagen VI.

Today, more than 90% of rare diseases have no FDA-approved treatment or cure, including CMD. It’s the conversations surrounding rare and advancing steps toward potential future progress that keep Berger and Roberts hopeful.

The two are continuing their advocacy efforts into 2025 where they plan to advocate for rare on Capitol Hill during Rare Disease Week and virtually attend Rare Across America this summer.

LINKS

Avery’s Instagram: https://www.instagram.com/avery.nicole916/

Avery’s LinkedIn: https://www.linkedin.com/in/averyroberts916

Kelly’s Instagram: https://www.instagram.com/thekellyberger/

Kelly’s LinkedIn: https://www.linkedin.com/in/thekellyberger/

www.innovatinginclusion.org

Transcript

KATIE: Hey, Avery and Kelly, so great to have you on Innovating Inclusion. We're so excited to chat with you. Would you two share the story of how you guys met and got connected? 

KELLY: Yeah, sure. Our cute moment. Me and Avery actually met virtually at a virtual community hangout and realized that we had the same subtype of, CMD Congenital Muscular Dystrophy.

And within that subtype we are also the same ultra rare part of that. So we just really bonded over that and realized we had a lot of same interest and, I just kind bond from there. We're just really grateful that the internet connects a lot of people, especially that disability community.

And we're happy to have formed this friendship. 

MANDEEP: Thank you for sharing that. Could you please define CMD for us? 

AVERY: Sure. So a lot of people usually hear of muscular dystrophy in general and maybe some of the other types like Duchenne or spinal muscular atrophy or even ALS is a part of that category as a neuromuscular disease.

But a lot of people don't hear about congenital muscular dystrophy. So Kelly and I live with CMD, more specifically, our ultra rare subtype is Collagen VI. And basically CMD is a rare, genetic muscle disorder that causes the muscles to break down faster than they can repair or grow, which leaves Kelly and I and our affected individuals primarily as mobility device users.

That enables our, independence and is our means of mobility throughout our daily lives. So I would say muscle weakness is really the main symptom of CMD, but there are other characteristics like some respiratory insufficiency as well. That's one that's often experienced by our affected individuals.

CMD has five primary subtypes. There might be more and we just don't know about them. But what sets CMD apart is that it's congenital so it shows up soon after or at birth. So it's a progressive disorder, so our community members across all the subtypes experience different severity.

And something that's just important to note that Kelly and I always talk about is that although someone might live with the same genetic mutation or the same subtype, that we're all still so different no matter what part you're at in your CMD journey. That's a little bit more on CMD.

KATIE: Mm-hmm. That makes sense. There was a statistic I found that said 90% of rare diseases don't have any FDA treatments or anything like that. So it's something you adapt with. And Avery, I know that you're a dancer, so would you tell us about dancing at Radio City Music Hall and like being on television? That is so cool, and I'm super excited to hear more about that. 

AVERY: Sure. Thanks. So I'm a dancer, a part of a professional dance company in NYC. So I'm really passionate about authentic disability representation in the entertainment industry and the media. I dance at the majority of the most well-known theaters at NYC.

And, like you said, I was fortunate enough to have the once in a lifetime opportunity to dance on the great stage of Radio City Music Hall. And yes, separately, I was also, among the first few wheelchair users to feature in a nationally televised live production. Um. And so I'm really grateful that I was the first, but I shouldn't have had to be the first, and that's something that in our disability community, we're so often, running into that we are the first. And so we have to create our own model for those who come after us. And so I'm really grateful that I'm among those in the disability community who are a part of the entertainment industry who are leading the way in creating that change. And who are working for increased access and knowledge and throughout our experiences, we're able to then bring our lived experiences to the front and use those to really shed light on what needs to be changed.

I'm really grateful that I can combine my love of dance with also breaking down barriers in the industry. So I'm looking forward to seeing what's to come for us, and I can feel that there is change coming. I think we see a little bit more every single day that more and more people are being represented and more and more people can see that their story can be reflected in any narrative, whether it be in a movie or a show or a magazine or even a book, really.

And so I am looking forward to the day where everyone feels seen and heard and validated. Worthy in those areas of entertainment. 

MANDEEP: Thank you for sharing that, Avery.

And Kelly. We know you're an avid concert goer. Could you please talk about your working to improve the live concert going experience in regards to accessibility?

KELLY: Yeahfor sure. I am a huge music lover in general, and I love attending my shows, so I am always plotting my next adventure to, whether it's an arena show or a small general mission venue. So when I go, I just definitely love to point out any accessibility needs to the staff or venue people to make sure that the ADA sections are clear and accessible and the viewpoints is really a big thing too. So sometimes the ADA sections aren't because they're sitting down the level of you being able to actually see the stage or the act isn't always as clear or good, so I just like to point that out to the venue or whoever I can speak to try to make things more of a pleasant concert growing experience and, so that you can actually see the artist and have a pleasant time.

So I'm just always trying to get support in those ways and make it easier for other ability device users to go to, to get out and see live shows and be a part of the community.

KATIE: I love that. How did you discover your shared desire to advocate and how did you strategize your advocacy work? 

KELLY: Me and Avery both empower each other in a way that, I know Avery was more involved in public speaking and legislative advocacy, and she really helped me to see the value in that.

So she encouraged me to get involved and I was like, oh, wow, this is really something, and just took off with it. So we both joined together and realized we're stronger together. And with both of our voices, we both dive in and try to get on all the levels, both, vocally and also on Capitol Hill as well.

So, we're just excited to keep challenging ourselves and seeing the impact we can make. 

KATIE: Would you share some of the highlights of your advocacy work, some of your biggest moments of your journey? 

AVERY: Sure. I feel daily we don't see a lot of change happening. But when there are those little wins , they really feel bigger to us just knowing that all our work really pays off.

And I think we've also learned that we're not gonna see change unless we spearhead it and prompt it. And so we've learned just the power of sharing our lived experiences and sharing our story. We'll ensure that public policy reflects the needs of the rare disease community.

And so I think we've just found that there is really power in numbers. And if we are able to come together as a collective then that's really what's going to empower real change. And obviously connecting with and building relationships with our legislators and our members of Congress' office and staff, those are the people who have the ability to make the real change really at the higher level. And so, although it might sound scary to reach out to them or to speak to them personally, they are, just like other people and they want to help. And so I think it's impactful just being in the room. And we're really grateful to have a seat at the table in those rooms 'cause it's not often that the disability community can, and something that comes up a lot in the disability community is that nothing about us without us. And we really try to stay true to that, that we need to have a seat at the table to ensure that our needs are being met.

MANDEEP: Thank you Avery. You spoke a lot to sharing the stories of your lived experiences with policymakers. Beyond that, how would you advise younger advocates to engage with, whether it's policymakers, healthcare professionals, or even researchers to raise awareness?

KELLY: Yeah, I think people don't realize that big or small, you can really make a difference. I know for me I'm just starting out really by filling out forms to submit to your representatives. So signing on to action letters and sending emails and messages or virtually even meeting with the representatives. I think that's just like another big first step that you can take if you're not up to or not able to get out physically to do those meetings. And also the power of social media by using your voice that you can take senators or take congressmen or whoever it is to raise awareness and get support and a following to really champion the, policy that matters.

KATIE: I know you're both involved with community outreach for Cure CMD. What can you share about your work and the mission of the organization? 

AVERY: Sure. Kelly and I partner with a lot of patient advocacy organizations to lead outreach programming as well as create educational and informative content and execute it not only for our community, but also what's unique about is that we're able to bring our unique perspective and angle to it as people who live with a physical disability ourselves. And so we really try to bring topics that are often ignored or overlooked. To the forefront as they are, at the forefront of the minds of those living with neuromuscular diseases or CMD.

And we also try to adapt to other people's perspectives to make sure that everything is being highlighted that needs to be highlighted.

KELLY: , I would just say living with CMD is to really give a voice to someone living with that.

It's considered ultra rare, so not everyone sees someone living with that. So it's really neat to get, to have that element to it.

MANDEEP: So Avery and Kelly, 

the question is what are intangibles people might encounter in spaces that cure CMD is present? And what barriers do you think still exist for people with rare diseases, particularly in the healthcare and education fields. 

KELLY: Living with the rare disease or being undiagnosed the rare disease genetic odyssey, our diagnostic odyssey is what they call it.

So just getting that genetic confirmation in general. Usually it takes about seven years for someone to really, get genetically confirmed and find a neurologist or experts who really take on their case and get those answers for them. So I think just coming to terms and getting that official diagnosis is that big missing piece to the puzzle of, getting those answers and just getting your support system in general finding your community, finding your people is really important to help support you in that journey so that you can get to the correct healthcare experts in that area to guide you in your care journey.

AVERY: I think it also starts with the next generation. And so I think, we talk a lot with PT, OT physician assistant speech therapy graduate students who are preparing for their future in the healthcare field just so that we can bring our own voice to it so that they know, as they're approaching this next phase in their professional career how they can personally impact their patients, or we like to say, affect individuals just because patients sound like we're sick or, in the hospital all the time. So it also, goes back to the language and the language they should use or try not to take us out of our chair just 'cause it's a risk to us or those who are transferring us and we're more comfortable in our chairs. Kelly and I talk about a lot that it also starts at education and educating our next generation and our young people. Just Kelly and I going out and being participants of society are truly so impactful and show that we can be a part of society even though it might look a little bit different just because of how much it takes to do, one simple errand and all the planning that goes into that simple task. We want to be a part of society. We just need people to accept us for that and accept it. And so I think we need to really empower the next generation to one, raise their voices but also to be supportive and allies and we always say that you don't need to live with a disability to be an ally to the disability community. And I think it really starts at the next generation, right, Kelly? 

KELLY: Yeah, for sure. You covered it with education. I know we're always preaching that start young and to start integrating that into being normalized, like having a disability is normal.

I really think that's a big part of it too. 

KATIE: Have you seen progress in how rare diseases like CMD are talked about and how they're treated publicly, particularly due to your education efforts?

KELLY: I think it's definitely helped start conversations surrounding that, which think conversations is the first step that can lead the change. Making people more aware too in general, that, it starts with all of us with the education and it's not just maybe it up to the disability community to educate others.

Education can start from anybody. Any equal body person can educate, their children or whoever about people that may live their lives a little differently. 

MANDEEP: And Avery and Kelly, would you give us an example of some of the language you share with students to use?

AVERY: Sure. We try to steer away from using the word "patient" when referring to people who are part of the disability community. We try to refer them to using more words like "affected individual' just 'cause it's less related to healthcare or being in a hospital or being sick 'cause really we're not sick.

And so with that also comes with trying to steer away from the word disease. And so we try to refer them more to the word disorder.

And you can go so much deeper into it, but that's the foundation of it all. 

MANDEEP: How do you think schools or workplaces or even our communities can be more inclusive and supportive of those with rare conditions?

KELLY: I know this has been more championed recently too. I've seen a lot of neat children's books pop up. I think it's really important to have characters and people in textbooks in children's books that they can see themselves in as actual characters. Just including those into libraries and schools and communities so that people can pick up a book and it has, a person in a wheelchair or just someone that's different that they can really see that normalized and explain, how to talk to somebody with a disability and just different things that.

How they play sports or how they do things differently. It's just really important to be seen in that and to see themselves in that type of media. And I also think that that moving on to more school age is definitely having programs within schools that, we're also a part of the actual classroom that we're not treated differently that we're also at the table with them just to normalize that so they can see us and acknowledge us and just be a part of things just like they are. 

AVERY: For education, I would say. I would love to see more clubs centered around disability or rare disease. I have seen a couple throughout my lifetime, but I would love to see more and I would love to see there be less of a gap between, quote unquote typical or normal students with people who are part of the disability community. I would love to see that gap bridged and have it be more of a smooth transition within the clubs.

I would say for the workplace, my dream would be to have an accessibility consultant at all times on staff in a workplace or work environment. And I would love to have that accessibility consultant live with a disability so that they can also then bring their lived experience to it.

So I'll just leave that there. Yeah, that would be my dream. 

KATIE: And while we're on the topic of, dreams and changes what changes would you most like to see in the next five to 10 years for people living with CMD? And if someone newly diagnosed with CMD or a family member came to you for advice, what would you want them to know?

KELLY: I would just say I would love for people to get their diagnosis earlier. I think that's super important to be getting the correct care as soon as possible because you have better outcomes in your life. So having more clinicians and physicians and all of that to be made more aware of CMD so they can get diagnosed earlier and just be on their journey sooner with those experts and be on top of their care.

As far as seeing the future I think my number one is just to, to have people get those answers sooner. 

AVERY: Often a lot of people in the rare disease community get misdiagnosed as well, and so I would love for there to be just a straight shot to that exact official final diagnosis. We're seeing very often that more and more people are getting diagnosed earlier, like babies. And that's so incredible to see and especially Kelly and I love seeing that just because it took us a very long time to get diagnosed. They're also shifting ways to diagnose CMD. Kelly and I were both diagnosed via a muscle biopsy, which is fairly invasive and risky. But we're seeing more and more, ways being created to diagnose people.

I think a lot of people don't know that you need to get genetically confirmed to then be able to participate in trials and get treatments when they do come and are created because there is no cure treatment for CMD right now. And so we really try and encourage people to get their genetic confirmation very early on so that they can then participate as well in the future.

MANDEEP: And Avery and Kelly what would you say beyond that, be your next call to action, and how can others get involved with the work that you're doing right now?

AVERY: I would say Kelly and I really look forward to continuing what we've dedicated our life's work to. We look forward to doing this, but we also encourage others to raise their voices to challenge stereotypes and the status quo to enact, positive and real change, but also promote what inclusion done right in society and what that means in all aspects of our life.

I would say, kelly and I love networking with people. I think there's. A lot of power in networking and connecting with others, not only in the disability community, but again, in all areas of life. And so I would just encourage that. I would encourage people to stay their authentic selves share a story make a seat at the table for you in all rooms just because our needs aren't going to be met unless we are able to then bring our stories and our experiences to it. Create conversations, keep them going to enact the real change on behalf of not only you, but others like you. And Kelly and I will continue to do the same and we're really excited to see what, the future holds for not only us, but for our community as well. 

KELLY: I would just add on to just don't stop fighting. We can always be stronger by banding together to really create a more powerful change and a better feature for us all. So yeah, there's definitely power in voices, power in numbers and we can definitely be stronger by uplifting each other and finding our community and really starting real change.

KATIE: Thank you so much, both of you for sharing these great nuggets of wisdom. Now we're gonna do a little twist and jump into the rapid fire questions.

And I'm gonna head to Mandeep for our first question that we ask each of our guests. 

MANDEEP: So Avery and Kelly, our question to you is, what does inclusion mean to you?

AVERY: I would say inclusion to me means meeting me outside of the box. I think society puts more specifically the disability community in a predefined box. And with that comes lack of access, knowledge and really just support in general in a lot of aspects of society.

And so I think inclusion to me means that the disability community is not a box to be checked off on a list. I think it's also an invitation to our community to participate in society like everyone else. And that we're represented in that way. I think Kelly and I explore very often in our work disability inclusion done right, and what that means I think a lot of people have different interpretations of that, but we love exploring what that means and how can we really enact that into all areas of our life and of society. 

KELLY: I would say for me, inclusion is just including everyone and to not have stereotypes and to the different types of people so that everyone is equal, everything is normalized, that it's just everyone is a part of it,

KATIE: Perfect.

. If you were stuck on a deserted island, what one item would you want to have with you? 

KELLY: Are we talking like essentials or I feel like water;s a solid choice. We'll get water.

We'll just play safe. We'll get water. 

AVERY: I would say my wheelchair, like I wouldn't be able to get around. I'm not, me without my wheelchair

KELLY: And this is true. I did not think that through. So I'm just stranded.

MANDEEP: What would you say is the biggest way in which you feel you break barriers?

KELLY: I would just say just being my authentic self and being present. Just being out in society in general, people get surprised to see people in wheelchairs out living their lives. So I think just being me is a powerful statement in itself. 

AVERY: That's exactly what I was gonna say. Well said. Kelly is authentic selves.

I think that's really what drives it home. 

KATIE: Yeah. And then if you could have one superpower to help with your advocacy work, what would it be?

KELLY: Maybe just having the ability to get all of the policy makers in one room and just really have at it and sign the papers, do the work and make the change right then and there and not have all the red tape and not all the this and that. Yeah, I would just love to have the change makers present and

AVERY: I think with that I would love to have every person in society live with a disability or be a wheelchair user for a day. And let me know how it goes. Let me know what they'd wanna have changed, and then we can go from there. So I don't know if it's that room that you're describing, Kelly, all the change makers and all the policy makers

KELLY: and we can make 

some sit in chairs and, yeah.

All 

AVERY: things. 

KELLY: Yeah. All in one. Let's two in one. Yeah. 

AVERY: Yeah. I like it. I would love that. I think that would, a lot of stuff would come out of that.

KATIE: Awesome. Thank you both so much. It was such a pleasure to speak with you and learn from you and we really appreciate you taking the time to come and share your experiences and your stories and your wisdom with our audience. 

KELLY: Thank you for having us.

AVERY: Yes, thank you for having us.