Her Daughter's Rare Diagnosis Changed Everything — So She Built a Platform to Change Healthcare

What do you do when your child is diagnosed with a condition so rare that only nine other kids in the world have it — and there's no playbook?

Today's guest, Kasey Walsh, lived that reality. After her daughter Robbie was diagnosed with a rare form of hereditary spastic paraplegia at just two years old, Kasey refused to sit on the sidelines. She bought Neuroscience for Dummies, taught herself genetics, co-founded a nonprofit, and connected with researchers at Boston Children's Hospital — all while raising two kids.

Now she's the Founder & CEO of Winsights, a groundbreaking patient-powered platform using AI to turn real family experiences into research-grade evidence for rare disease communities.

In this episode, we talk about:

-The moment that took her breath away — and how she found the strength to keep going
-Why families often have to connect the dots that the medical system misses
-How she found her voice in rooms full of experts
-What she's building with Winsights and why it matters for every rare disease family
-Her advice for anyone facing something unexpected: don't say "why me" — say "plot twist"

Timestamps:
00:00 — Intro
00:30 — Meet Kasey Walsh
02:16 — The diagnosis that changed everything
04:43 — Navigating the early days as a special needs mom
05:32 — Starting a nonprofit & finding other families
09:16 — Buying Neuroscience for Dummies — the moment she took control
12:16 — What is Winsights? Turning anecdotes into evidence
14:59 — Finding her voice in rooms full of experts
16:28 — Advice for anyone afraid to advocate for themselves
19:36 — "Don't say why me — say plot twist"
20:09 — Where to connect with Kasey & learn about Winsights

Connect with Kasey:
Winsights: https://winsights.life Website: https://kaseywalsh.com

Connect with Jennie:
Podcast IG: @girlwhynotyou_
Website: https://girlwhynotyou.com Email: mailto:podcast@jennieblackwood.com

#raredisease #patientadvocacy #momentrepreneur #healthtech #winsights #kaseywalsh #hereditaryspasticparaplegia #caregiver #AIinhealthcare #rarediseaseresearch #womeninbusiness #girlwhynotyou #jennieblackwood #podcast #femalefounder

Transcript

SPEAKER_01 0:00

I'm Jenny Blackwood, a small town mom of four who refused to settle for a life that didn't light me up. When everything felt uncertain, I didn't run back to a nine-to-five, I bet on myself. I took a simple idea and turned it into an almost seven-figure business my first year, all while being a mom first. Now I'm here to help you trust your own power. Chase the dream that keeps tapping your shoulder and build a life that feels like you. This is Girl Why Not You. Hello, hello, friends. Welcome back to another exciting episode of Girl Why Not You? I'm Jenny Blackwood, and today's conversation is about what happens when life takes a turn you never saw coming. Because we talk a lot on the show about building a life you love, but what happens when you're suddenly in a reality that you didn't choose and no one is coming to fix it for you? Today's guest didn't just navigate that moment, she transformed it. After her daughter was diagnosed with a rare genetic condition, she found herself in a system where families were left to figure things out on their own, connecting dots, searching for answers, and carrying the weight of the unknown. She was reading research late at night, tracking symptoms, documenting everything, and connecting with other parents doing the exact same thing. And instead of waiting for the system to change, she decided to build something herself. Today she's the founder of Windsights, a platform that's rethinking how research works by treating patients as partners in data and discovery. Today we're talking about what it looks like when the system falls short, how to trust yourself when you're not the expert, and how to build something meaningful from the most unexpected place. Casey, I am so honored to have you here today.

SPEAKER_00 1:43

Jenny, I am just thrilled to be here, honestly.

SPEAKER_01 1:47

Thank you so much. I I really admire you. I'm excited for everybody listening to get to know about you and your story. Um, you know, I know you've been through something very difficult. And instead of letting it crumble you, you found a way to let it empower you to help yourself, to help others. And that is like next level human right there. So I really appreciate it being here. I'd love to start here because for everything that you've built, there was a moment, obviously, that changed everything for you. So can you take us back to when your daughter was first diagnosed and what that felt like for you as a mom?

SPEAKER_00 2:22

Yeah, well, I mean, it isn't it's the entire story is really incredibly nuanced and interesting. Um, because I will say, as a mom, as a parent, it was awful. It was took my breath away. And and when I mean that, like I there was hyperventilating at certain points. Um to backtrack a little bit, before kids, I was a healthcare service coordinator for the muscular dystrophy association. And I met parents and children and patients with care with muscular dystrophy, and I moderated the parent support group and the patient support group. So I had this weird extra layer of perspective. And so we got this diagnosis, it was ultra rare, but we knew there was nine other kids I knew of in the world with it. Wow. But I honed in, it was it was a lot bad. I honed in that the oldest was in their 20s, and Robbie was two.

SPEAKER_01 3:31

Yeah.

SPEAKER_00 3:31

And it was really trying to cling on at the rought tears of carrying neurodegenerative disorder over, you know, a couple decades, severe intellectual disability, non-verbal, all these terrible, terrible symptoms and presentations and impact. I hung on to 20 years plus. Okay. Yes. Science, research, perspective.

SPEAKER_01 3:57

Right. Right. Yeah. I I can't even imagine how heavy that felt, you know. I mean, as a as a mother, you know, and so you didn't find out until she was two.

SPEAKER_00 4:09

Yeah. Um, about two and a half years old, I think. Um, yeah. Yep. Yeah. So we knew something. So hard. Yeah.

unknown 4:18

Yeah.

SPEAKER_01 4:19

It's um, you know, it it's it's uh one of those things in life where it probably felt impossible to navigate at that time, you know, when you talk about hyperventilating. I mean, I our kids are our world, you know, and it's like we want what's best for them. And for you as a mother, you know, hearing that had to be crippling, truly. Um, which is why I think it's incredible that you're here today and all the things that you have built. So what were the early days like, you know, when you were navigating the unknown? Let's let's start there and kind of work our way into what became.

SPEAKER_00 4:51

Yeah. Well, you know, I mean, it first started out as a mom navigating just, you know, the special needs daughter at two and my son at five, who's super precocious and, you know, full of energy and just trying to balance the dynamic. So I don't, it's not too heavily weighed on my daughter and her needs, and that he doesn't feel put aside. And that that was something I had learned from, you know, support groups with the caregivers and and parents. Um, early on in the nonprofit days when we I actually we actually did find another family, uh, you know, sort of circumstance, curiosity, a lot of circum, but got lucky enough to find another family, started a nonprofit, and it was all of a sudden, okay, there's research, people are doing research for other rare diseases. There's not a playbook particularly that we know of.

SPEAKER_01 5:44

Yeah.

SPEAKER_00 5:45

But there's other people doing it. And it's really, it's just, I mean, I feel like it's the same, it's almost it's like learning a new subject, taking on a new um business endeavor, being a child. Like you just ask questions. Who do you who's doing this? You look, you learn. Um, and it was just say, throw everything at the wall, really, and be like, just absorb, absorb all the information while balancing the kids, while learning during naps. Like it was a lot.

SPEAKER_01 6:15

Yeah. Did you feel supported like in the beginning, or did you feel more isolated?

SPEAKER_00 6:21

I think very, very beginning. It was isolation, um, that moments, the times before being okay to share it with people, sharing one at a time. And then eventually I blasted it on Facebook. And I remember um, you know, my my memo's a little like, uh you sure you want this, you know, out on Facebook. And I said, I don't want to tell every single person when I meet and cry again about this. Like, let's get it over with, pull off the band-aid. Um, and I really, I did realize that the more I shared, the more receptive and people wanted to help. And and and it got less isolated, and more people reached out to me with their own sort of issues. Um, so it became less isolating.

SPEAKER_01 7:10

I'm glad that you had that support. You know, it's like I'm sure you it had to have been incredibly difficult to want to share, but seeing people rally around you and give you that support, I mean, you needed that. You deserve that. So when did it hit you, you know, as you're going through this and you're like, oh my gosh, nine other kids in the world? Like this is there's not a ton out there. When did you feel like I might have to figure this out myself?

SPEAKER_00 7:37

Well, fortunately, you know, really early on, it wasn't just it, it wasn't just me. We had found this other family very quickly. We started a nonprofit. We knew that there was other, it it her disorder falls under an umbrella, hereditary spastic paraplegia. So there were other subtypes that experienced it. And we knew there was research going on. Um, we had connections with uh Boston Children's Hospital and people in pharma. And as soon as we started asking, people wanted to help and wanted to, you know, do what they could resource-wise or or you know, intelligent uh experience-wise to help. Um eventually, though, I did realize, you know, the first conference at the end, uh, the the moderator asked, you know, we listened to science the entire time and and the safety of maybe gene therapy and and the risks and and what's the best way to go about. And at the end, the moderator was so kindly was like, okay, we've heard from everyone their questions. The you know, science, the the specialists. I want to know the questions from the parents.

SPEAKER_01 8:46

Yeah.

SPEAKER_00 8:47

And it was like silence, and I looked around waiting. There's four, you know, very few of us because it was so rare and we were just starting to find others, and I was felt like no one was gonna say anything. So I just stood up and I said, you know, what all I care about is the safety of what we're childing. Like all I care about is that it's not going to make things worse. And that was the moment I realized I had to learn so much more about her disorder, about the biology. I bought, you know, neuroscience for dummies, genetics for dummies, molecular and cell biology for dummies. And I was just like, okay, I need to I need to know more about this.

SPEAKER_01 9:24

You're taking this on. You know, it was a way for you to feel like you had more control of the situation, you know, which in a situation where you feel totally out of control and helpless, I'm sure that gave you some peace, you know. Is this kind of like when you started going through all of this, is this when you realized and kind of started looking at the system differently than maybe you had prior to this diagnosis?

SPEAKER_00 9:49

Oh, yeah. Uh, yeah. I I and to be honest, to be completely transparent, I never really even thought about the system. I was very lucky to have been, even though I worked in the nonprofits and and with patients and caregivers, I never had to think about the system. Like I had doctor's appointments once a year, maybe when, you know, like and so it was really I started to understand when there's more complications involved, that there's so much more effort that needs to be put in. And I don't want to make it sound like it's like it's there to help. Everyone that's in the fields want to help. The those institutions, the the procedures that it's built to help. It just isn't built to particularly well.

SPEAKER_01 10:37

Yeah. And that totally makes sense. So you talked a lot about how families often have to connect the dots themselves. So can you kind of paint the picture for us? What do you mean by that?

SPEAKER_00 10:48

Yeah, well, especially with rare disease, but also I think in other conditions, uh, you have so much unique experiences as an individual, with or without health involved. Yeah. Environmental, you know, um, people in your life. And so it's really hard to understand what other people's are going through exactly in general. But when you throw a rare disease in and literature is so, so, you know, sparse.

SPEAKER_01 11:12

Yes.

SPEAKER_00 11:13

You you tend to realize that, oh, anything could be of meaning. And and I really started to see this when I started the social media group on Facebook that parents were introducing their child. And it's it's strange because it's not even a symptom because they were introducing their child as full of joy and just this this life in their life. But even more so than I, you know, I love my son, he's amazing. But like it was really this particular like personality they seemed, and I started paying attention to other things and and having an older son and knowing his circle of friends, I'd be like, I wonder if this is tied to the disorder. And it was really, but then you'd have you'd see the what's in the publication and and it is not there. So how do you know?

SPEAKER_01 12:03

Totally. Yeah, and everything's probably circumstantial, you know. I mean, it's gotta be similar but different for everybody. So, how do you feel like you and what you've built is unbelievable? Can you explain to us what is WindSites and how is it changing the way research is actually done now?

SPEAKER_00 12:22

Yeah, well, uh, well, so it is not yet launched, but it is, it's the reason I came up with it is because I knew this was happening in different industries, in different professions. I knew the technology was there. I knew conceptually this can work. Um, what it is going to do is I say turning anecdotes into evidence. It's the using machine learning and AI as it is now, you know, to be able to track patterns and there's a social media aspect first to it, uh, which will launch first. And that's really just getting the communities on a platform that feels safe. It's HIPAA, you know, with GDPR and medical grade protection, um, HIPAA guardrails, just to make sure that they feel comfortable sharing their experience. But what it'll do is be able to um it's de-identify and and see if there's trends popping up. Do right, you know, one of the ones in my own daughter's group is is gluten. My daughter got diagnosed with celiac and gluten impacts kids. So yeah, it's really trying to to tie that and turn it into the evidence that it could be useful towards therapeutics and endpoints.

SPEAKER_01 13:36

That's amazing. That is truly amazing. I love that you've done this. And when when is the launch date? Do you have a date in mind?

SPEAKER_00 13:44

Oh, just yesterday. We're we're aiming for June 1st. Um my gosh, coming in. Big meeting. Yeah. Big meeting. Oh my gosh. I mean, anything can happen, but it's it's like we are really trying to tighten everything up and get it out.

SPEAKER_01 14:00

What's that gonna be like for you, the day that that goes live? That everything that you've been working so hard to build, what is that gonna feel like?

SPEAKER_00 14:09

Well, you know, that'll be an amazing moment. The more amazing moment for me is is is people trusting us to come on to it to begin with. And to be able to actually see the results. This to be able to give back to the patient communities what it's going to be. But that day will represent it's only been a year since we I started, but years and years and years of thinking about it, paying attention, reading. It'll it I'm tearing up at the thought. Yeah.

SPEAKER_01 14:43

Yeah. You've been through a lot. How old is your daughter now?

SPEAKER_00 14:47

12.

SPEAKER_01 14:48

My goodness. So for 10 years, wow. So honestly, you've had to advocate in rooms where you weren't always the expert. How did you find your voice, you know, as a parent who's been going through this?

SPEAKER_00 15:04

Yeah, that's a great question. Because I was, you know, growing up, I was always sort of the silent one. Let, you know, go with the flow, stay in my place, stay in my zone. Um circling back to that one question, you know, what does the parent think? What do we care about what the parents feel like? That was an opening to be like, oh, okay, you know, I my experience matters. Robbie's experience matters. Yes. And then as, you know, realizing I had the access to the patients in the community, but also I was talking to the investigators and and realizing the bottleneck and and what they couldn't ask, but I could. Yes. I started to, you know, say, hey, is there a message you'd want me to share that's, you know, it is not necessarily that they there's IRBs. They can't, things can't come from them. But I'm like, well, if it's important for research, I can say, hey, make sure you fill out that survey or something, you know, like I and so I started to speak in that way for us. And then I started to just, yeah, keep going. I just kept going.

SPEAKER_01 16:12

You just kept going, you never gave up. You know, you you truly turned this into your passion for out of love for your baby. And that is incredible. How, like, if there's somebody else out there, and obviously it may not be the same scenario, most likely not. But what would you say to somebody who's going through something similar where they feel like it's something that is a challenge that they're afraid to speak up about? You know, there's probably been a lot of times where you're like, oh, I could have just sat back, relaxed, and let Western medicine take care of it and just accepted my fate, my daughter's fate, but you didn't do that. So for somebody else who's sitting on the sidelines going, ah, I really want to advocate for this, but I'm scared to speak up, what would you tell them?

SPEAKER_00 16:56

Say, you know, what's the worst that could happen by speaking up? Because if you don't speak up, you the it's a missed opportunity. You know, if you don't speak up, you don't get any answers. If you do speak up, you might spark a conversation and insight that will lead to more answers right then or are, you know, a hint for the doctor to pay attention to.

SPEAKER_01 17:17

Yeah.

SPEAKER_00 17:18

So I'd say, you know, just go for it.

SPEAKER_01 17:21

Yeah. If we don't advocate for ourselves and our loved ones, nobody else is going to. That's the problem.

unknown 17:28

Yes.

SPEAKER_00 17:28

Yeah, yeah. And that's and it's empowerment. Really, we we saw it in the beginning, we were stripped of all power, knowledge, balance, really, and what we expected and wanted out of life. And you got to get that back. And and speaking up is one of the like, I'd say, easiest ways once you get used to it.

SPEAKER_01 17:47

Yeah. It's so, so true. I feel like this journey has probably taught you a lot about yourself, too. You've probably, like you said, you've really come out of your show. You were the one that was quiet. You know, I you feel like this has probably changed you a lot as a person and as a mom.

SPEAKER_00 18:05

So much. And it it it really makes me wonder have I changed as a person or have I really just unlocked stuff that was always there and never really had the opportunity to come and bubble to the surface. Um, it really, I do when I think back, I think of it as an unlock. And it's so bizarre to think of it that way because it's adversity. It's like one of the hardest things I've ever gone through in my life. But it brought out like strength that I never knew I had.

SPEAKER_01 18:31

Yeah, absolutely. I would definitely go with the ladder. I think it's definitely that's always been inside of you. You just unlocked it. And Robbie is so lucky to have you as her mama, just as you are lucky to be her mama. I was gonna say, so lucky to be her mama. God put you as her mama for a reason. So for the woman who's out there listening, who is facing something very unexpected right now, what would you want her to know?

SPEAKER_00 19:00

Very unexpected, you know. I mean I in my experience, it has been that the unexpected things that have come in front of me and the way I have chosen to handle them is has led to some of the most biggest success and progress for me personally and what hopefully will be for, you know, the communities that I care about, the research. It it just I I I read something somewhere and said, you know, and I know it might be hard to wrap yourself around this, but like don't say why me, but say, you know, plot twist and think of yourself as the hero in your journey because I really truly believe that that's where the power comes from, is knowing that you have the potential and the ability to do it. Yes.

SPEAKER_01 19:54

That's incredible. It's so well put. I I just adore you. This has been a very powerful conversation. And for anybody listening who feels inspired by what you've built and wants to learn more about what you're doing and the support that you're giving, where can they connect with you? Learn more about Windsites, where's where's their next step?

SPEAKER_00 20:14

Yeah, well, for me personally, I am trying to come out and step out more and really share what helps me go through the process because as we talked about, it was very lonely to begin with, very isolating. Um, and how you know I found support and perspective. So uh CaseyWalsh.com. I'm starting to set up a messenger, um, 30-day messenger to try to help people navigate a challenge of caregiver, um, being a caregiver parent with a child with a rare disease. Um, and then windsights.life, uh, www.winsights.life talks more about the platform. It's a closed beta for my daughter's disorder and and potential therapeutic that might have been identified that we'll be uh going through hopefully trials soon. But it's we hope to expand quickly once we will. We understand it. Thank you.

SPEAKER_01 21:09

You absolutely will. I am sure of that. You are the type of person that you're not gonna stop until you do. And I love that about you. So, I mean, everybody out there, if this episode spoke to you, if you're in a season that feels uncertain or overwhelming or just completely unplanned, just let this be your reminder. You don't have to have all the answers. You don't have to be the expert, and you don't have to wait until you feel ready. Sometimes the most meaningful things that you're gonna build come from the moments that you didn't choose. And Casey is a really prime example of that. If you want to learn more about what she's doing, I will absolutely tag all of that in the show notes, Casey, so that people can find you. Most importantly, everybody, take one step because even in the unknown, you are capable of more than you think. Casey Walsh, thank you for what you're doing. Thank you for the mission that you're on. I know that others in this world are so grateful for you being at the front lines and pushing this through. You are going to make such an impact for your daughter and for others who are going to experience the same thing in the future and currently experiencing it now. I wish I could jump through this screen and give you the biggest hug right now. Thank you for being here.

SPEAKER_00 22:18

Thank you so much. And I so admire what you're doing too. And the people you you're highlighting such strong, strong, smart, amazing woman. So thank you.

SPEAKER_01 22:29

Thank you. Thank you so much for being here today. Everybody out there, let's take Casey as a prime example of how to be our best selves, how to work through challenges, and how to never ever give up when something means a great deal to you. Keep pushing. You can do this because, girl, why not you? If something in this episode made you sit up a little straighter or dream a little bigger, don't ignore it. That's your future nudging you. I'm living proof that you can start messy, start scared, start in the worst timing, and still create something beautiful. Thank you for listening to Girl Why Not You. Now go take one small step towards the life you've been craving. Hit subscribe, leave a review if you feel called, and share this with someone who's ready for more.