The Superpower of Being An Advocate - Sehreen Noor Ali
Season 1, Episode 5
Building a family should come with a few additional titles: advocate, investigator, superhero, and diplomatic negotiator. Sleuth co-founder Sehreen Noor Ali donned those roles as she watched her young daughter miss developmental milestones. After quitting her full-time role, she and her co-founder took on the task of building a seamless way to leverage machine learning and more than 62,000 parents' answers to help caregivers be champions for the health and wellbeing of their families. Sleuth emboldens parents to have access to credible information instead of Googling "Is this normal" and hoping for the best - all because Sehreen and Alex took a challenge and found the opportunity to help others.
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Show Notes
About Sehreen Noor Ali:
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Transcript
Sehreen Noor Ali:
Know yourself. You know, if you don't, if you are not your own North Star, then what is your compass point? You know, like, I think that the thing that I've done more than anything is I've become my number one person. Like, I know that I am here for myself.And I'm blessed to have very, very strong relationships. But realizing that I can be that person for myself makes everything so much easier and helps the noise.
Like, I still see the noise, it still impacts me, I still wonder if I'm enough, but it's sturdier on the inside, you know?
Amy Kugler:
This is And More with Amy Kugler. It's a show where we'll explore all of the stories about motherhood and caregiving and how they can be a driving force for change. We'll talk about the challenging and hilarious moments that we rarely say out loud, and we'll find a way forward that lifts us all up. Let's get started.
Hey everyone, it's Amy and I have been thinking a lot about how much as moms and caregivers we have to advocate for the health and well being of ourselves and our families. I mean, I knew coming into parenthood and motherhood that my goal, a la Dr. Becky Kennedy, my responsibility is to be the person who is in charge of health and safety and my, my kids can repeat that verbatim but you know, it never really hit me that I was going to be both a mom and an observer and an investigator and a researcher and somebody who Googles at 3 am and it's wild.
And when Evie was born, now a little bit more than a year ago, I remember walking into her doctor's office after our stay in the NICU knowing more about her vitals than I knew about my own name or the date.
That's just the reality of where we are. Even though I have the most supportive partner and family, I felt so alone.
I was clocking milestones and weights and temps.And if I could have connected and heard the stories from other parents who had been in a similar spot or something. A friend recommended Sleuth to me, and I realized as I was using it in a doctor's office for both of my children, I was like, this is what I have been looking for.
And so all that to say, I had to have their co-founder Sehreen Noor Ali on the show.
So I'm so excited she's here.
Let me tell you a little bit about her and then I'll welcome her on and we'll get started.
Sehreen is an award-winning technology entrepreneur and a background in social justice, which you know I love. She humbly calls herself a public servant turned technologist, but really her resume speaks for itself. She ran the U.S. Department of State's Fund for Innovation and she founded EdTechWomen along with another huge list of accomplishments. And it wasn't until 2018 when her young daughter started missing milestones. And that's, that's really where this story comes to life, you know, where she quit her job and did a deep dive to finding answers. She met her co-founder, Alex, who was a data scientist turned soon to be dad, right?
And then they said on this mission to empower parents to be the best experts and advocates for their children's health and development, you know, no small task. So all of that is how Sleuth was born and I am so excited to talk to Sehreen today about her journey and her and more stories. And Sehreen, so grateful you're here.
Sehreen Noor Ali:
It's so good to be here. Your personal story touched me so much.I feel that to my core.
Thank you.
Amy Kugler: Yeah, no, it was it was vital.
I'm like sitting in the doctor's office with with sleuth an older version. I learned of yeah, and obviously a more beta version because you just launched the public version like last week.
Sehreen Noor Ali:
Yeah last week. It's been a ride. I'm telling you before this is like very funny to work so hard to get to the starting line.
It was like, we're at base camp. We're like an Everest base camp.
We have so much more to do, but I'm very grateful that we got here.
And that I get to talk to people like you who totally understand why we're doing what we're doing.
Amy Kugler:Absolutely. Well, I mean, Everest Base Camp. I think you need to trademark that because I do see the potential for this to go so big. It's totally true.
Well, let's let's talk about how you got here. We talk a lot about on the store on this show about the stories that kind of define us as mom and caregiver and more. So what is your story that defines you in that moment?
Sehreen Noor Ali:
This is gonna sound weird. I'm not the type of person to say this. And I don't know who it is. I knew I was going to be a mom with if the universe willed it, I was going to be a mom like I have a journal entry from when I'm six years old, where I have written to my future daughter, like and I am not the person you know, something like I never thought about marriage. I think about planning.
It's like when my wedding came, like someone actually had to tell me to get colors like in theme. I was like, I don't know what you're talking about. I just had this innate sense that I thought I was going to be a mother. And everything that has ignited me about life centers around my kids. It's not as much about being a mother as it is about my kids.
And so when my daughter started missing from Milestones, I think there was no doubt in my mind that there was a role I had to play to figure out what was happening. And even when my first daughter was born, I swear to you, I thought she was my sister for a year, like a year.
I was like, I'm sorry, you came out of my body. I get that. But the relationship wasn't like maternal as much as it was like, you are under my care, because the identity took a long time for me. So it really was about the child, if that makes sense.
Amy Kugler:
I think, and that's an interesting perspective because I think there are so many stories around motherhood where it is the full identity shift, but, or it's an identity shift or it's a pivot.
But for you, it was, I know that I am your caregiver.
You are under my care.
Yeah.
So when you decided
When you saw the milestone slipping, right?
And I mean, was it immediate that you were like, okay, first of all, I've got to focus everything on here.
Or was that a gradual transition for you?
Sehreen Noor Ali:
No, it wasn't.
I think one of the things that was actually hard for me was that I didn't have a strong gut feeling.
I think that my identity, I always wanted to be the chill mom.
I never wanted to be the helicopter mom, if that makes any sense.
And I don't know where that comes from.
But
And so what I ended up being was hyper aware, but a little slower to react.
So I knew there was stuff going on with her.
And what I would do is just ask a lot of people.
And eventually, I ended up talking to moms and children that were older, who said, listen, this one thing that you keep talking about, like, why don't you just go to a neurologist?
And so that's how it ended up kickstarting everything.
And then I kept talking to other moms, and I was like, oh, okay, I need to keep going.
because I didn't have a lot of other mothers in my life.
Like I wasn't, my friends were all at different stages.
And so it really was, it just kind of felt like me and then the people in my family, like my in-laws who had kids that were older than my kids.
Right.
And so it was weird.
It's very weird.
Amy Kugler:
Well, it's, I mean, but it's the thing is that when you come back to it, the stories of others are highly influential for us, even if we have just met them on a playground because friends, listeners, like,
Sehreen is on the East Coast so and you know like it's really hard and a very busy day today to like really connect with people deeply in order to share those stories right that are around okay well my kid and these are vulnerable stories too right that you're yeah you're connecting with other moms and saying okay my kid is not doing x y and z uh yeah what do I do like
How did you approach those kinds of conversations with grace and vulnerability?
Sehreen Noor Ali:
Yeah, I think I went to people that I was safe with. You know, I knew nothing about motherhood when I started. And it seemed like everyone around me knew everything. They knew how to get their child on a sleep schedule. They knew what snacks to send to daycare. We used to get a notice from the daycare being like, you might want to try more variety of foods for your daughter because she doesn't like eating this. And I'm like, you know, and now I look back with a lot more confidence than I had.
And I was like, look, my daughter has sensory stuff. Like she does not like the like feeling of a lot of food.So actually, I probably did the right thing. But like, when we signed the forms of like intake for the daycare when she was four months old, they were like, what's her sleep schedule? I looked at my husband and I was like, what sleep schedule? Are you telling me that other four-month-olds actually sleep?
I was like, we're doing everything wrong. This feeling, I had this feeling all the time that I was doing something wrong.
And so that's why Facebook groups are good. You can be anonymous. So I went to where I was anonymous or I was safe.
Amy Kugler:That's amazing.
I mean, yes, and it's not until I mean, because especially with very young kids, right?
And for those of us who are in the thick of that, like, you know, it the sleep deprivation cycle is real, and you very much feel in a vacuum, right?
So it's like, what are you telling me that other kids are saying, and my kid isn't, or I just thought that you're just surviving, right?
Sehreen Noor Ali:
Especially in those early days, it's just survival.
Amy Kugler:um but to be able to say and to have those this is why our system in some ways is set up this way for better for worse is like okay well at daycare we understand what different milestones are or our doctors right during those different checkups will ask those questions to get us thinking and I don't know about you but when I go to those moments I sometimes waffle on
Well, is this developmentally appropriate?
Is this too much?
Is this not enough?
Because I hear too from doctors sometimes where it's like, oh, you know what?
They'll get it later.
Yeah.
And I hear that, but I don't know that I totally trust it because I don't have a reference point for it.
Right.
Sehreen Noor Ali:
Well, it's also because the milestones are talked about vertically, not integrated.
Right?
And so it's like, okay, well, it's useful to know that if they're doing a lot of these other things, and they're behind on this other thing, that maybe that's fine, right?
We don't have a comprehensive view of how our child is doing.
And that is one of the things that we've tried to design at Sloot, which is like, you can actually see how your child is doing across multiple areas, because that gives you kind of a more fine grained picture of what's happening.
And you're exactly right.
It's like the daycare, like those, they're like first responders, right?
When they're with a kid, especially for a first time parent.
And I was talking to someone who was saying, like, look, you should try to get sleuths into the centers, because actually, what's hard for the teacher, and the caregiver is how to talk to the parent about what they might be seeing.
And, and you can be the bad guy.
Or you can be the good guy, like, because you can actually start capturing some of this.
And so the daycare can capture, the parent can capture.
Amy Kugler: And I really love that idea, because you need to communicate across multiple systems, right?
Sehreen Noor Ali:
As a parent, your ecosystem feels like our ecosystem feels very fragmented, but we're still part of a, like an ecosystem, like I have my child's school and their pediatrician and their PT and their OT.
How do you communicate?
Absolutely.
And this is the conversations that you and I have had.
It's like, some days, it feels like just making the doctor's appointments and making sure they're on the calendar feels like a win.
And it is just baseline, right?
Like that is, that is minimal.
And that's, and it's not to not to make anyone feel bad.
It's just more like, that's a lot of effort to get to that.
And to be the observer and the researcher for your own children like it takes more and it takes more scaffolding right or systems in place to make that happen so that everyone's talking across the board.
Amy Kugler:That's, that's wild.
Let's talk a little bit about, because I want to go back into your personal journey in a little bit, but I also want to hear, I want you to explain a little bit more for our audience about Sleuth and what purpose it serves in its current form and where you guys want to take it.
Give us that background right now.
Sehreen Noor Ali:
Sure. The purpose it serves right now is for parents to know if what they're saying is normal. We ask this question a lot as parents, like, is this normal? And we go on Google and it's like, how many words should my 12-month-old know?
You can actually take quizzes on Sleuth, and based on your input, we can show your child's output as a number.
You can see what children of the same gender and age are getting on their score and what the predicted value of that symptom getting better or worse is, right?
Because what we've done is we've crowd-sourced 62,000 health histories from parents and we have a vast database so you can see trends.
You can see if it's associated with everything else.
And for most everyone, their child is within a curve of normal, right?
Because most kids are healthy, which is great.
If your child needs more attention, that does not mean that they're unhealthy.
It just means they need more attention.
You'll also be able to take that information and advocate for more care.
Amy Kugler:The piece of the integrated health though.
Tell me more about that.
Sehreen Noor Ali:
And so, you know, right now we have coverage of 285 children's health topics. So the things that you would Google, you can actually find a lot of information. So we're talking to someone today whose three-year-old is hitting, and he's like, it's really bothering me that my three-year-old is hitting. It bothers me even more than potty training. There's a quiz, like aggressive behavior, you can take the quiz, you can see how your child is and what the likelihood is that it gets better. And really, it's actually very normal, right?
Sometimes you just want to know that your child isn't going to go hit someone, like when they're sick, right?
And right now, you probably better figure out something.
But you know, as we continue to grow, we want to get deeper into different diagnoses groups to help families.
And we want to make it seamless. for the mental load, right? So that you can go on your phone and say, like, I am inputting my daughter's leg pain right now.
So if you're next to the bed, oh, your daughter's complaining about leg pain, it's inputted, and you can retrieve your own information more seamlessly.
And that's where a lot of the advancements in AI and UX come in, and that we can start employing.
And I'm super excited, because really, it's going to be, the future is more seamless, you're not going to have to go to like 20 different apps to get answers.
And so we want to be on the cusp of that.
Amy Kugler: I love this.
Tell me how, where you see AI in some ways playing a role within this?
Because I think that often, sometimes our listeners will hear AI, and then we have lots of opinions across the board and what is in media.
So tell us more about where the role AI plays.
Sehreen Noor Ali:
Yeah, it's scary, right?
The way that we've been presented, what AI is, is very scary.
And so we've actually been using a component of AI, which is called machine learning and natural language processing, since the beginning.
And what that means is that the database that we've created is in parents' own words.
It's the only parent-derived database for children's health.
So that means you and I describing our children as we see it, we've made meaning out of that and we've proven that it's highly accurate.
So let's say we have an ADHD quiz with 23 questions.
And what we did was when we surveyed parents, they talked about the ADHD symptoms they found in their child in five different areas.
And so now our quiz covers those areas and you can see
But in order to make meaning of a parent's words, we had to use text embeddings.
And text embeddings is a technology that actually says, if this word, if this word is my child can't sit still, and it's associated with this word, this is the meaning around it.
And so for 15,000 different vectors on kids can't sit still, it's kind of incredible.
I mean,
We have a lot of technology under the hood.
And so that's the part of AI that I think we don't talk about, because all of a sudden, it became sexier in a different way.
But that's always been part of it, right?
Like, how do you make meaning?
And so basically, we have this massive symptom and condition map that we've created from caregivers own expertise.
And that's really the main way that we're using it.
I think, you know, to touch on data privacy, because it's so important.
Parents,
When they share, they don't have to share.
And when they share, it's not attributed to their child.
We don't even ask for a child's full name or their full birthday.
And what's interesting is that a large percentage of parents do share.
Because I think that we know how much we want to contribute.
Like I've told literally my my kids doctors like you shouldn't use urgent information for research because there's so little pediatric research.
Amy Kugler: Absolutely, absolutely.
And I think there's a part two with and to your point of the fact that leveraging machine learning and AI in this way, not only makes it more accessible, but obviously, there's so much more, I mean, privacy, you know, security scaffolding built into this, where I fully trust
You know, and this is just as a, you know, let me just say I am not paid by Sleuth.
I found this on my own.
But what I did find is as I was taking the quizzes for both my kids, right, because I can have two profiles within that,
I have the quiz for Brendan, I have the quizzes for Evie, and I do those on the regular and they take like five minutes.
But I'm noticing that like the language is so approachable and relevant and accurate.
It gives me more language to then talk to their doctor or their teacher or their school guidance counselor or the person who's sitting with, you know, Evie at daycare and saying she's, you know, eating X but not eating Y. And I'm like, I can tell you exactly why.
Sehreen Noor Ali:
Plus, she's also probably kind of bored, right?
Like,
Right?
Amy Kugler: Yeah, she's also probably kind of bored with the puffies.
Not gonna lie.
She's an opinionated one.
But, you know, to your to your point, though, is that there is so little pediatric research around, you know, around certain conditions and diseases and disorders, that we just need more data, like we really do.
And we don't have the funds to pour into that research.
Right.
Sehreen Noor Ali:
So I have milestones and even just basic milestones, you know, like, one of the things I learned
was that pediatricians don't get a lot of training on speech development.
How do you know that as a parent?
How do you know?
Right?
And we need more of that data, we need updated benchmarks, we need to know what just like normal childhood development is.
I mean, like, when I read these peer reviewed articles, and I look at the data set that they're using, I was like, that's old.
Do you know what the demography of the US is now?
That is a different demography.
It's totally different, right?
And it's post quarantine.
So like, things are different.
Amy Kugler:
Things have shifted.
And so that's where that sort of Sleuth comes into play, which I love.
And so we're going to keep talking about this, and talking a little bit more about, you know, your own journey to and through all of this after we get back from break.
But until then, it's And More with Amy Kugler.
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Amy Kugler:
Hey, everyone, we're back with And More with Amy Kugler.
And I am here with Sehreen Noor Ali, the co founder of Sleuth.
And we were talking about how as parents, we can be the best advocates for our kids, both in their health, their physical health, their mental health, I mean, across the board, really.
And as we were talking about
sleuth and how you you know, how you and your co founder built this incredible product that I fully advocate again, not paid by sleuth here.
Um, you know, as you were talking with moms, in those initial days, and as you think about it now, what advice would you give parents, moms and caregivers about how to best advocate for their kids in these situations?
Sehreen Noor Ali:
I think tactically, to learn the art of diplomacy, the amount of social capital that you have to manage and accrue and dispense is enormous.
And I was a bit of a firecracker when I was younger.
I was like, what you see is what you get.
Which is funny, because I actually worked at the State Department in diplomacy.
So you can understand how I loved it.
But when I left, I was like, I get opinions.
This is great.
But the training came in really handy.
Because at any point in time, you are asking the same person to move against their interests or the interests of your child.
But also need to make sure that you maintain that relationship, right?
And that's true of an I, if you're doing an IEP, if you're working with your pediatrician, if you are working with a nurse practitioner, right?
You kind of, ironically, have to be as likable and as powerful as possible.
And sometimes that balance is counterintuitive.
Amy Kugler:How did you find that?
Particularly for women.
Sehreen Noor Ali:
Yeah, especially for us because it's like, you know, we walk in as assertive and we get called one thing and then we walk in as super likable and we get called another.
So, like, how did you navigate that with your two kids?
How did you find that out?
I think I had to, you know, my husband jokes with me.
He's like, I've never seen anyone take the top neurosurgeon in the U.S.
to task.
And I was like, you know what my thing on that is?
It's like, you just did brain surgery on my child.
I will ask you anything I need to ask, but I will not be wearing PJs.
So before he came and did his rounds at Cornell at six in the morning, I would change into my day clothes and be ready for him.
Right?
And so it was in like, I ended up playing the tactical game, but I generally had not in life played a tactical game in terms of that kind of stuff.
Because I was like, you will, you, you will take me seriously, and I will respect you.
And I will push you, because you literally opened up my child.
Right?
And I think part of it is knowing that as a parent, what you might face is people thinking you know less.
And at every point in time, you indicate that actually, I know more
your domain is being an MD, my domain is knowing my child.
Amy Kugler:Yeah, that's, that's vital.
And how we show up in those moments, even if it feels I don't want to put words in your mouth, but did it feel like it was playing a part in that or playing a different role in that way?
Or was it did it feel natural?
Sehreen Noor Ali:
No, it very much felt like putting on the superhuman like the superhero costume, which is not an analogy I always gravitate to.
But the thing is, like when you are battling anything with your child, whether it's something like severe, like my child, or it's like seeing your child struggle in school, there's nothing that makes you feel weaker or more vulnerable, right?
It is so hard to see your child struggle.
And so in order, it was like a get up suit.
But the good thing is, it generally works.
And that's great.
Right, like to find a tactic that works means that you can stick with it and you can probably get similar results.
Like now I'm taking pretty seriously with some of these like in the engagement.
But I would also say like with the the social capital component and diplomacy component is like I was so busy last, I don't know, like April or something, and I decided to send treats to my kid's school for Eid.
And I was like, I don't have the time to do this.
But I did it.
And it was did it because like for my kids identity, so they know they're Muslim, but also like, honestly, like, I just want people to like me.
Like, I want a passion.
Because I asked, I need help.
I need to take my daughter out of school 10 minutes early for a doctor's appointment.
It's a give and take.
Right.
And there's nothing, it's not all transactional.
It's not all transactional.
You're right.
And there's nothing that says give and take better than food, frankly.
I'm not gonna lie.
Right?
Amy Kugler:Like, let's let's encourage, let's encourage us all building culture, cultural understanding.
And here's some fun.
Sehreen Noor Ali:
I have to tell you something really funny about that. So I sent chocolate brownies, like chocolate chocolate brownies.
And so apparently the third graders were like, That doesn't look like brownies.
It looks like something that starts with a P. And I was like, you just made my day.
Amy Kugler:Like, how great is that?
When third graders are third graders?
And I was like, from your perspective, I see your point.
They are special.
They are special, special kids.
I mean, that's a special age.
Sehreen Noor Ali:
And also it's like, wow, I, I love that you went there.
I love that you went there.
Oh my gosh.
Amy Kugler: Sehreen, this is such an incredible conversation.
I feel like we have a lot more to cover and I'd love to have you back.
But, you know, in the meantime, how can people find you and connect with all of the goodness that you put out in the world?
Yeah, find me on Instagram.It's my full name.
And check out Sleuth and let me know what you think and what you'd like to see more of.
I love that.
Amy Kugler: We will put all of that in the show notes as well.
But until next time, Sehreen, thank you.
Thank you.
Thank you so much to you for having this.
Yeah.
This is so fun.
Amy Kugler:
Sehreen is an absolute force.
It's been a privilege to get to know her a little bit more, but also just to see the evolution of Sleuth in its many forms.
and as it's going to pretty much change the game in healthcare and how that was really brought forth from a very personal journey.
I have three key takeaways and I'd love to share them with you.
First, the levels of being an advocate for our kids are not cut and dry.
We have to be diplomatic.
We also have to remember that the people who are also helping us in these situations, whether that's a healthcare setting or an education setting, they truly do want the best for our kids.
It's assuming best intent.
So, and how do we do that?
We show up, we are armed with our knowledge, and we figure out ways to make this as seamless as possible.
I know I'll do this probably more often as my kids grow up.
And I wish I would have done that more in the past, especially when we were in the NICU with Evie.
Second, the future of healthcare is changing with machine learning.
We have the power to use tech advances for good, to make healthcare more acceptable, accessible, approachable, and insightful.
And three,
We have to be our own North Star to trust that knowing when something might be off or on track, knowing when to ask questions.
How that being our North Star does not mean that we can't rely on the village and community around us.
We're all in this together.
And it takes having those vulnerable
Honest conversations at the park, with trusted resources online, with our doctors, with our educators, with just a mom you run into on the street.
This is where we gather our intel.
This is how we figure out what we need to pay attention to versus the noise that is outside and just ever present everywhere we go.
Friends, I hope there is something here that you can grab onto this week.
Until next time, onward and upward.
Before I go, I'd love to hear from you.
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It would mean the world to us if you'd follow, rate, or review on Apple Podcasts, Spotify, or wherever you get these stories.
and also share it with friends.
You know the ones that want to hear it.
Until next week, onward and upward, my friends.
We'll see you then.
Amy Kugler:
Before I go, I'd love to hear from you have a story that we should talk about For And More, click the share your Story button on Welcome to beam.com and make sure you're signed up for our newsletter there to get all the information about upcoming events, giveaways, and more. You can also follow us on Instagram at Beam for Moms. That's b e a m, the number four M O M S. I'd love to shout from the rooftops from my team who makes this beautiful show possible. Special thanks to Stacey Harris, without whom the entirety of beam would have been just a fleeting thought. Of course, Dave Nelson, the man behind the mic, and all the production for all these things. Benny Mathers, our producer for the KKNW support and graphic design by the Inimitable Sullivan and Sullivan Studios. And I cannot forget my Dave, Brendan, and Evie, the trio that pushes me always to be more myself. To all of Beam's founding members, we are eternally grateful. Thank you for your unwavering belief that the power of our stories can make a difference. And to you, my gorgeous listeners and guests, we love you. Thank you for trusting us with your stories and your time. It would mean the world to us if you'd follow rate or review on Apple Podcasts, Spotify, or wherever you get these stories. And also share it with friends, the ones that want to hear it. Until next week, onward and upward, my friends. We'll see you then.
