CMT Resilience Redefined

If resilience feels like a buzzword, consider this a reset. We explore a lived-in roadmap shaped by the Charcot-Marie-Tooth community, where change is constant and the goal isn’t to bounce back—it’s to move forward with smarter tools, stronger ties, and a lighter emotional weight. With Lily Sander, the 2025 MDA National Ambassador, and Estela Lugo from the Hereditary Neuropathy Foundation, we trace how connection creates “disabled joy,” a kind of relief that comes from being understood without translation. That recognition becomes fuel for action, whether it’s showing up at advocacy days, finding candid advice in digital groups, or letting positive representation shift your inner narrative.

Estela reframes resilience as the overlap of physical and emotional capacity. She names the hidden fall risks—blurred boundaries, comparison traps, people-pleasing—and offers a practical check-in using the Hawkins Scale of Emotions to move from heavy states like shame and fear toward courage, pride, and desire. We dig into fear management that’s actually usable: scout accessibility, use assistive tools without apology, and remember past wins as evidence. The message isn’t perfection; it’s honest capacity and self-grace, especially after stumbles. Purpose does the rest, turning the act of getting back up into a habit you can rely on.

We also get tactical with planning. Keep the vision, flex the route. If the dream is travel, adapt the method—cruises, companions, accessible gear, or remote work that funds the path. Service ties it all together: when you give back, fear shrinks, and pride grows, and your story helps someone else stand taller. We end with a memorable metaphor: the Alter-G treadmill that lifts body weight is also a lens for life. Community, flexible goals, and self-compassion are your emotional Ultra Gs—tools that reduce drag so you can keep moving. Subscribe, share this with a friend who needs a lift today, and tell us: what’s your Alter-G?

Watch this HNF + MDA webinar series on CMT and more here!

Connect with CMT Community at the 2026 CMT Summit & Retreat on 4/16-18 in Ellicott City, MD. Register here! 

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Transcript

SPEAKER_00 0:00

Welcome to the deep dive. You know that feeling when you've done all the research, you've gone to the webinars, you have this pile of amazing sources just sitting there. We're here to give you that shortcut right to the core insights.

SPEAKER_01 0:12

And today's deep dive, it comes from a place of really uh intense personal experience. We're looking at material from inside the Charcot Marie Tooth community or CMT.

SPEAKER_00 0:22

And what we found is this powerful, really actionable roadmap to understanding resilience. I mean, not as some kind of buzzword, but as a genuine practiced skill.

Setting The Stage For Resilience

SPEAKER_01 0:32

That's right. Our mission today is to sort of pull together the wisdom from two amazing voices living with CMT. We have Lily Sander, who's the 2025 MDA National Ambassador, and Estella Lugo from the Hereditary Neuropathy Foundation.

SPEAKER_00 0:45

Aaron Powell And what they have to say about building support systems, about adapting to constant change and uh finding real joy even when things are incredibly difficult. It's just universal.

SPEAKER_01 0:55

It really is. I mean, as soon as you start digging into these sources, you realize the context might be a specific physical condition, but the lessons they apply to anyone.

SPEAKER_00 1:03

Aaron Powell Yeah. Anyone dealing with a high-stakes challenge. It could be a career shift, uh, you know, a complicated family situation, or just the grind of modern life.

SPEAKER_01 1:12

Okay, so let's get into it. The place to start, really, is with the absolute foundation of their resilience, which is connection, community.

SPEAKER_00 1:21

Right. And if we look at Lily Sanders' story, her journey began with a lot of uncertainty. She was diagnosed at four, but that was after being misdiagnosed with clubbed feet.

SPEAKER_01 1:30

Her specific conditions are CMT type 1E and HNPP. And for anyone who isn't familiar, these are inherited neurological disorders. They cause nerve damage, mostly in the arms and legs.

SPEAKER_00 1:42

So she finds her way to the MDA care center in Iowa, but the real uh the real light bulb moment came much earlier.

SPEAKER_01 1:48

It was MDA summer camp. Lily says camp was the first time she ever saw, and this is her quote, kids with disabilities that looked like me.

SPEAKER_00 1:56

Imagine that. I mean, up until that point, she's navigating the world without a mirror, without seeing her own life reflected anywhere.

SPEAKER_01 2:02

And seeing that reflection, it let her name something incredibly powerful, something that completely flips the script on disability. She calls it disabled joy.

SPEAKER_00 2:10

That concept is just it's the core of everything.

Discovering Disabled Joy

SPEAKER_01 2:14

Yeah, it really is. She defines it as uh the elation that I feel when I'm with other disabled people, and every part of my being feels deeply understood. It's not about ignoring the hard stuff, it's about that instant mutual understanding.

SPEAKER_00 2:29

Aaron Powell What's so amazing about that is the, for lack of a better word, the efficiency it creates. She says, we don't have to spend time explaining and translating our daily experiences. Other people just get it. That just cuts through so much emotional work.

SPEAKER_01 2:45

Aaron Powell It's a huge burden lifted. And that's the connection for you, the listener. I mean, think about any time you've walked into a room, a professional group, a hobby club, whatever, and you just feel seen. You don't have to put on a mask or explain your background.

SPEAKER_00 2:56

That freedom is the joy.

SPEAKER_01 2:58

Exactly. That freedom from explanation.

SPEAKER_00 2:59

Aaron Powell, so once that connection is there, how do they keep it going? What are the practical ways they're building out these support systems?

SPEAKER_01 3:07

Well, the sources show they're using a bunch of different avenues, mixing the physical and the digital. So Lily keeps up with friends from camp and the ambassador program, but she also says digital connection is absolutely essential.

SPEAKER_00 3:19

So we're talking about things like Facebook groups.

SPEAKER_01 3:21

Yeah, specific CMT and MD Facebook groups where people can be really candid and share advice. But it's more than just, you know, scrolling. Right. She talks about using Instagram or TikTok, not just for the positive representation, which is huge for your mental health, but for that direct human-to-human connection with creators. You need that validation that you're not the only one facing this specific thing today.

SPEAKER_00 3:46

But it's not just online.

SPEAKER_01 3:48

No, and that's key. She says while virtual spaces are great for connection, there's something special about being in the same room. She says there's something in the air at conferences or advocacy days.

SPEAKER_00 3:58

Like MDA on the Hill.

SPEAKER_01 3:59

Exactly. Being in a room with a whole group of disabled people, feeling that shared persistence. It's a powerful charge.

SPEAKER_00 4:06

And that shared identity becomes a launch pad for action. You know, going to those events, sharing personal stories with lawmakers, using that to push for real change. It connects the personal experience to this big collective impact.

SPEAKER_01 4:19

Which is a perfect transition point, really, because if step one is that external connection, step two is the internal work. It's about redefining resilience itself, which is where Estella Lugo's insights come in.

Building Real-World And Digital Support

SPEAKER_00 4:30

Aaron Powell And Estella has been in this world for a long time. She was a child ambassador way back in the 1987 Jerry Lewis Telison era. So she has this long-term view of adaptation.

SPEAKER_01 4:40

Aaron Powell And she makes this crucial distinction, right, between the dictionary definition of resilience and the way the CMT community actually lives it.

SPEAKER_00 4:48

Aaron Powell The dictionary just says it's the ability to spring back into shape.

SPEAKER_01 4:51

Right, to return to your usual shape after something bad happens.

SPEAKER_00 4:54

Aaron Powell But with a progressive condition like CMT, that definition just doesn't work. The ground is always shifting under their feet.

SPEAKER_01 5:02

Exactly. Because CMT means you're continuously losing some nerve function over time. Your physical shape is always changing. Maybe you need a new brace. Maybe you need a walker. There is no usual shape to get back to.

SPEAKER_00 5:16

So their definition is about moving forward. It's the ability to adapt and just to keep going through all that change. It's not bouncing back, it's adjusting your landing gear while you're still in the air.

SPEAKER_01 5:28

And Estella has this fantastic way of putting it. She says she has a PhD in falling.

SPEAKER_00 5:33

I love that. It's not a complaint, it's a statement of expertise.

SPEAKER_01 5:36

It's earned expertise. She actually challenged herself once to count how many times she physically fell in one year. The number was 64.

SPEAKER_00 5:44

64 falls. But the most important part of that math is that she got up 65 times.

SPEAKER_01 5:50

That's it. That's the whole reframe. And the community loved it. People started calling their own stumbles things like uh masters in gravity checks.

SPEAKER_00 5:57

It just shows that resilience isn't about not falling. It's about the practice of getting back up.

SPEAKER_01 6:02

Mm-hmm. And she breaks this down visually with a Venn diagram. She says real sustainable resilience is that sweet spot where your physical resilience and your emotional resilience overlap.

SPEAKER_00 6:14

Aaron Powell The physical risks seem obvious, right? Rocky ground, slippery floors, carrying something heavy. But the real danger, the blind spots, are what she calls the emotional fall risks.

SPEAKER_01 6:26

And those are the things that lead to burnout. The sources list them out. Blurred boundaries, being a people pleaser, staying in unhealthy relationships.

SPEAKER_00 6:34

And the big one, constantly comparing yourself to able-bodied people.

SPEAKER_01 6:38

That one is so powerful because that pressure to keep up when your body literally has a different capacity is just it's exhausting. And if you're a learner in a demanding job, you might feel that same pressure to keep up with colleagues who have more resources or time.

SPEAKER_00 6:52

It's the exact same dynamic.

SPEAKER_01 6:53

For sure. And a Celi gives us a tool to manage this emotional weight. It's called the Hawkins Scale of Emotions.

SPEAKER_00 6:59

What's so smart about that is it gives you a visual way to check in with yourself, to see where your emotional energy is at any given moment.

SPEAKER_01 7:06

Right. So at the bottom of the scale, you have the really heavy emotions that weigh you down and make getting up that 65th time so much harder. Things like shame, guilt, grief, fear.

SPEAKER_00 7:18

The shame around needing a mobility device or the guilt somebody might feel about potentially passing on a gene, I can see how those would be incredibly draining.

SPEAKER_01 7:27

Totally. And then at the top of the scale, you have the lighter emotions, the ones that give you lift. Courage, pride, desire. The goal isn't to never feel the heavy ones, but to be able to access the lighter ones.

SPEAKER_00 7:40

She even said that anger can sometimes be a positive force.

SPEAKER_01 7:43

Yeah, when you channel it right, it can be the booster rocket that gets you out of a place of feeling stuck or depressed.

SPEAKER_00 7:48

But it takes active work. You can't just wish it.

SPEAKER_01 7:51

No, you have to practice. Estella says you have to consciously start tossing out the heavy stuff. That means actively stopping those mental scripts about having to be perfect or hiding your challenges.

SPEAKER_00 8:01

Tossing out the guilt, the perfectionism, and just stop doing things you don't actually enjoy. For you, the listener, this is about tackling that imposter syndrome, right? That feeling you have to do it all alone.

SPEAKER_01 8:13

It's about respecting your actual capacity. Right now, today.

Redefining Resilience With Estella Lugo

SPEAKER_00 8:17

And that internal work has a direct impact on how they handle fear in the real world. Like the fear of an uneven sidewalk is a very real danger for someone with CMT.

SPEAKER_01 8:27

But instead of letting that fear paralyze you, the advice is to use it as a trigger, a prompt for active management and self-advocacy.

SPEAKER_00 8:34

Advocacy here basically means being resourceful.

SPEAKER_01 8:37

Totally. It's using a cane or AFOs, it's calling a restaurant ahead of time to ask about accessibility. It's even using Google Maps Street View to check out a route before you go. You're managing the environment instead of just reacting to it.

SPEAKER_00 8:49

And you pair that with an internal reminder. I've handled tough situations before. I made it through. You use your own past success as proof you can do it again.

SPEAKER_01 8:58

Which leads right into the idea of self-grace. Estella talked about recovering from a bad fall and realizing she had to give herself the same empathy she would automatically give a friend.

SPEAKER_00 9:08

We are always our own worst critics, aren't we?

SPEAKER_01 9:11

Always. So the work is to strengthen that positive inner voice. And when you do have one of those falls, physical or emotional, you have to know your reason for getting back up. For her, it's her family, her partner, the community, the work she does. That purpose gives you momentum.

SPEAKER_00 9:29

Okay, now this next part is a huge takeaway for anyone who values planning, which is a lot of our listeners. How do you set goals when your life or your body is constantly changing the rules?

SPEAKER_01 9:40

This might be the single most actionable piece of advice for the learner. The goal itself should not change, but the path to the goal must stay flexible.

SPEAKER_00 9:48

That is so profound. It protects your big picture vision from the day-to-day setbacks. The example was wanting to travel the world.

SPEAKER_01 9:55

Right. That ambition stays. But how you do it might change completely. Maybe now you're looking at cruises because they're more accessible. Maybe you need different mobility devices or a travel companion.

SPEAKER_00 10:05

You might switch to a remote career or find adaptive sports that work with your body's current abilities. Yeah. You don't abandon the dream, you just find a new, more flexible route.

SPEAKER_01 10:15

Exactly. And if we go back to that Hawkins scale, the highest level of joy, the very top, is being in service, which brings everything full circle back to community.

SPEAKER_00 10:26

That's the ultimate weapon against fear and guilt.

SPEAKER_01 10:29

It is. No matter what you can offer, contributing back to your community is a huge source of joy. It boosts self-compassion, self-pride, and it just shrinks the fear.

SPEAKER_00 10:39

And that bravery is contagious. Estella shared a video of herself struggling on a staircase, something that would have embarrassed her as a kid. But sharing that, that helps so many other people feel less alone.

SPEAKER_01 10:50

Yes, it builds that collective bravery. And the last piece of actionable advice is maybe the most important. Schedule joy.

SPEAKER_00 10:57

If we schedule meetings and appointments, we have to schedule the things that bring us peace and love and lightness.

SPEAKER_01 11:03

You have to block out the time. Treat movie night or playing cards with the same importance as a doctor's visit. It's not an extra, it's preventative medicine to lighten the load.

SPEAKER_00 11:12

And to help with that, the HF has actually created physical resources. Yes, tools to reduce effort, which is so critical when you're dealing with fatigue.

SPEAKER_01 11:21

Yeah, things like a 30-day self-care journal, a pain management guide, an adaptive products guide with everything from special shoes to kitchen tools.

SPEAKER_00 11:31

It's all about using every tool you have, emotional or physical, to save your energy for what really matters. Which brings us to Estella's final fantastic metaphor, the Ultra G treadmill.

SPEAKER_01 11:44

The Ultra G, it's this special treadmill that uses an anti-gravity bag to lift you up so it reduces your body weight while you're walking or running.

SPEAKER_00 11:51

So people with major physical limitations can move in ways that would be impossible under normal gravity.

SPEAKER_01 11:56

Exactly. And it's such a perfect metaphor for everything else we've talked about.

SPEAKER_00 11:59

Right. So if the ultra G is a physical tool, what's the emotional version of that?

Emotional Fall Risks And The Hawkins Scale

SPEAKER_01 12:04

It's the community. The community is an ultra G that provides lift. Self-grace is an ultra G that reduces the weight of shame. Flexible goal setting is an ultra G that lets you move forward without the weight of perfectionism.

SPEAKER_00 12:16

It's a way of saying never say never. That you can find the tools, physical, digital, emotional, to lift yourself up.

SPEAKER_01 12:24

Exactly.

SPEAKER_00 12:25

So after all this, what does it mean for you, the learner, taking all this in?

SPEAKER_01 12:29

Our deep dive shows that real adaptable resilience, it's not a solo project. It's that powerful intersection of self-advocacy, resourcefulness, and community support.

SPEAKER_00 12:40

We've seen how valuable connection is when you're facing constant challenges. So the final question we want to leave you with is this When you're up against your next complex challenge, what is your metaphorical banister? What's your ultra G treadmill? The system, the person, the practice you can lean on to lighten your load and help you get back up.

SPEAKER_01 12:56

Because finding that intentional support system, that's the most strategic first step you can take to build true, adaptable resilience.