Nancy Gianni

Guy Kawasaki:
I'm Guy Kawasaki, and this is Remarkable People.
This week's remarkable guest is Nancy Gianni, Founder and Chief Belief Officer of GiGi's Playhouse, author of Generation G, and CNN Hero.
After her daughter was born with Down Syndrome, Nancy started GiGi's Playhouse to change the way the world views Down Syndrome, and to send a global message of understanding and acceptance.
Backing up, let me provide some basic information about Down Syndrome. Typically, people are born with forty-six chromosomes. Babies with Down Syndrome; however, have an extra copy of chromosome twenty-one. This affects a baby's physical and mental development.
In the United States, approximately 6,000 babies are born with Down Syndrome each year, or one out of every 700 babies. GiGi's Playhouse has sixty locations. They provide educational, therapeutic and career training for people with Down Syndrome and their family, all for free.
I'm Guy Kawasaki, and this is Remarkable People. And now, here's a remarkable force of nature named Nancy Gianni.
Nancy Gianni:
Down Syndrome is when a child is born with an extra twenty-first chromosome. It's going to range in different ways. It will affect cognition, low muscle tone. And for me, low muscle tone is really the big piece of what makes everything so difficult for our kids.
When a typical baby is born, they're checking out the world. When our kids are born, they're teaching their bodies to suck, swallow, and breathe at the same time. The things that God gave us to do naturally, they have to teach their bodies to do.
And that's why we started the Playhouse, was to help give them all the tools, help teach them all of those things. Because a lot of times people think it's because they're slow. They don't know how to do those things.
No. Their body works different. They have low muscle tone, which is really tough. It takes over 100 muscles to engage to say one sentence. Muscles. So things you don't even think about affect individuals with Down Syndrome. So that low muscle tone, to me, is really the biggest underlying issue that they have.
GiGi had open-heart surgery when she was four months old. They tend to have some other issues as well. But many of those, they're able to overcome with the amazing medical technology that we have these days.
Guy Kawasaki:
Okay.
Can you take us back to the first few hours, or days, after your delivery? The reaction of the medical staff?
Nancy Gianni:
Yeah. We had no idea that she was going to have Down Syndrome.
When I look back now, there were some incredible signs that something huge was about to happen in my life. And it wasn't until after she born, that I realized it was.
When we found out I was pregnant, I remember telling my husband, because some weird things had been happening. I was like, "I don't know. I have been pregnant with this baby, and this baby is making me stand up for people. It's putting me on this moral high horse. I don't know why I think I belong here. I'm challenging people."
I'm like, "I swear to God. I think this baby is going to be like the president, or a world leader. I don't know what she's going to be, but she's going to be amazing."
And never in my wildest dreams did I think it was that she was going to have Down Syndrome.
I remember when she was born. It was a C-section, so it started out a party atmosphere. Everybody was having fun. And then the three white coats came in, and then they told us that they saw what they thought were soft markers for Down Syndrome.
I just remember, in that moment, it just echoed in my head. I thought that maybe I willed this on my family, because I was always drawn to people with Down Syndrome. I just went into complete panic mode. I didn't hear anything else they were saying.
My husband was standing behind me, so I couldn't see him or his reaction, because everything just went medical.
It went from, "Congratulations, you had a baby." To, "There's this, there's that, there's this."
And she cried like my other kids. I held her like I held my other kids. She was still my baby, but all of a sudden she was all these... There were so many medical conditions that they kept talking about with it. I just asked them if we could just go see our baby.
And I remember when my husband came around and we finally had eye contact, I said to him, "If anybody can handle this, we can. Can you imagine what better kids our children are going to be because of her?"
Actually, he was the one who said, "Can you imagine what better kids our children will be?" He was the one who said that. So I knew we were both on the same page.
But then, all of a sudden, everything changed. The party atmosphere was gone. There was no more celebration.
In fact, they kept sending in the clergy, and that made it... Any time you pray, praying is so emotional. When you're praying for something happy, when you're praying for something sad. So when you're praying for... It's emotional.
I just remember, another priest would come in, and then this would come in. And I kept thinking, "Maybe she's dying, and I just don't know it."
They would come in and the medical staff didn't look at me anymore. There was no more eye contact. We went from being the cool, fun couple in the morning, to that family that now has a child with Down Syndrome.
And they took really good care of me medically, but they couldn't look at me anymore. They couldn't find a chart fast enough, so that they wouldn't have to engage in talking about what this life might be like for me.
And all I remember thinking was like, "How do I go home and tell my kids, when I can't process this myself, the way I'm being treated? Just this difference, that we're now that family. How do I go home and tell my kids?”
That was probably my biggest fear.
Guy Kawasaki:
It's difficult for me understand the reaction of the medical staff.
Why would they treat you like that? Did they think it was contagious or something?
Nancy Gianni:
Do you know what they know, Guy? They know textbook Down Syndrome, and textbook Down Syndrome isn't pretty.
And then when do they see our kids? When they're sick. They don't see the amazing... They don't see GiGi singing the National Anthem at the Cubs game. They don't see the joy she brings to my family every day.
They see our kids when they're sick. They see the textbook Down Syndrome. The fact that 80 percent of people terminate their pregnancy implies they don't belong.
We have medical professionals who tell our families, when they refuse to terminate... One Geneticist came out, when one of our families refused to terminate, and said, "I don't expect my dumb dog to come in from out of the rain. What do you expect this child to do?"
Guy Kawasaki:
No!
Nancy Gianni:
Honest to God! I am not kidding. When people say, "Is there any hope?" When it's just a Down Syndrome diagnosis.
They're told by different medical professionals... I'm not saying all medical professionals. But there's a lot of them out there who don't necessarily see the beautiful side of Down Syndrome, that I try to let the world see.
Guy Kawasaki:
Are you talking about when GiGi was born, and now things are better? Or is this still true?
Nancy Gianni:
It's still happening, still to this day.
Guy Kawasaki:
I'm floored.
Nancy Gianni:
To this day.
And I hear more about it, because with sixty locations around the country and startups, I talk to so many families. Do you know what I mean? So I hear about it more and more.
And I hear the negatives and I hear the positives, and we try to praise... Whenever there's a positive, when a pregnant mom goes somewhere and there's a positive, we really try to praise that, and try to keep that going. And the ones with the negative, we try to educate them. But you know with some people, you're not change the way they think.
There was just somebody, a Congressman, who just stood up and said that, "Some lives aren't meant to be," and he was talking about kids with Down Syndrome, specifically.
Now, today. This happens to this day. It's amazing to me. I don't want to get on a soapbox. You're getting me all worked up over here, Guy. But it is, my brother.
It is happening to this day, in this world, our kids aren't accepted and they have to fight every day. Every single day. They wear their diagnosis on their face, and that makes them victims. It's tough.
I would like to think that we've gone beyond this, but unfortunately, it is still going on.
We're doing our best and we'll continue to do our best to educate the medical community on the amazing gifts that people with Down Syndrome bring the world.
Guy Kawasaki:
I would make the case, and I would put myself in this category. That I have had so little contact with anybody who has Down Syndrome, that my reaction is empathy, sadness, pity. Those kinds of emotions. But I need you to tell me what's the reality of life for GiGi.
Nancy Gianni:
Oh, my gosh.
Guy Kawasaki:
... you know?
Nancy Gianni:
Yeah.
Guy Kawasaki:
Are these the right reactions that people should have?
Nancy Gianni:
Yeah. 100 percent. First of all, it was funny, because somebody at my gym came up to me and said, "I didn't realize you were GiGi's mom." And I was like, "Oh, yeah. You should come by sometime and get a tour." She was like, "I can't see that. I can't see that kind of stuff. I cry too easy, and I can't see"... I go, "GiGi's is the most positive place you will ever walk into in your life."
And what I love about GiGi's Playhouse is, yes, we serve individuals with Down Syndrome, but we serve the entire community. And we teach them empowerment, and love, and respect.
The minute you walk in there, you will walk out of there an advocate. You will walk out of there energized about Down Syndrome, because you learn. You realize that things just take them a little bit longer, but they do it.
They've got a determination and a spirit. A spirit of forgiveness and love, and they see the good.
Somebody could be the meanest person in the world, and they're going to figure out what is good about that person. That is who they are, and that's how they make people feel. So their gift to the world...People that don't know. Like this woman who was like, "No, I can't see that." She would have walked out of there... And did she come after that, and said, "I just didn't know. They're amazing."
The amazing gifts they give back. The gifts that God gave them, that extra chromosome, that's just full of empathy, and love, and determination. They give it back to the people around them, and that's why GiGi's Playhouse is what it is.
People come in all the time saying, "I came here to volunteer for them, and my life has been changed."
That's what we call the ‘GiGi's Ripple Effect’. Everybody, whether you're in there as a spirit, or a volunteer doing whatever it is you're doing, you become better by being around them. It's really amazing. It's really amazing, and you need to walk into a GiGi's, and feel that energy and that love that is pure acceptance and empowerment.
Because you walk around going, "God didn't give them the muscles to do all this and he gave them to me. If they can do it, I can do it."
So it empowers everybody who walks in the building.
Guy Kawasaki:
What is the reality of life for GiGi? What is like? What is her day like? Because again, people like me have no contact. I don't know what her life is like.
Nancy Gianni:
Yeah.
She is seventeen years old. She works out every day. She has a boyfriend for two years. She goes to school. She speaks at every GiGi's Playhouse Opening. That is her favorite thing to do.
Today, I think she signed about 250 acknowledgement letters. She writes notes to all of the donors. And when we send their acknowledgement letters, she signs them.
So she's very much into makeup. She's very much into SnapChat, Instagram, and social media. Everything you can imagine. She's absolutely hysterical.
She's starting a podcast. She starting doing beauty tips and makeup tips. She works out every day. I'll go downstairs. The music will start cranking. Then I'll hear the punching bag. She's on the punching bag.
She is so unbelievably, I guess I'd say normal. You know?
The hard part is that people don't know that, like I say all the time. She speaks at every GiGi's Playhouse Opening. All across the country, in Mexico. Wherever we go, she's a speaker, an inspiration to everybody there.
And yet we walk through the airport, and people still stare at her. Kids laugh at her. People are afraid of her. They still don't know the tremendous potential that she has.
What she wants more than anything else in life is to fit in. She wants to be... Like clothes. She's on a diet now. She lost twenty-six pounds. She's killing it.
Her inspiration was because she wants to wear popular clothes. She wants to just be one of the other teens in her high school. She wants to be a cheerleader. She wants the same thing everybody else wants.
She prides herself on going to work on days when she doesn't have summer school. So that's always a big thing.
She's just an inspiration to so many, and she truly is a gift from God. She inspires me every day to be a person that I don't that I would have been or could have been, without her in my life.
The hard part is that her body works a little bit different, so she has to work harder to do those milestones.
So I know what you're saying about just not knowing. When she finally learned how to walk, through all kinds of physical therapy and everything else. And then she couldn't jump. I'm like, "What do you mean you can't jump? Who can't jump?"
You don't even realize how deep low muscle tone goes. Like who can't jump?
I look at people when I see them with their kids at the park. "Do you even know how lucky you are, that your kid can jump?"
My other kids, literally when we realized, "Okay. She can't jump." My kids taught her the dynamics of jumping. Every day they were like, "Down and up, down and up." Like how does it not come natural?
So I understand when you say you don't get it, because I truly didn't get it, and I was living it. I didn't realize how limited their bodies were and how strong they were. That's when I was like, "I will never stop fighting for these kids," because that's when I realized how strong they are.
They weren't given the tools that all of us had been given, and sometimes take for granted and don't use. They weren't given those tools and they have to teach their bodies to do what comes naturally to us.
And that's why I will always talk about their strength and the amazing people that they are. But you're right. People just don't know from the outside, and that's what we're trying to change.
Guy Kawasaki:
So speaking of people who don't know, regardless of their intentions and being a good person and all that, what is absolutely tone deaf to say to you or GiGi?
What makes you just shake your head when people do something?
Nancy Gianni:
To say you can't do something. That she can't do something. We don't put limits on anybody. So to limit us in any way possible, me with GiGi's Playhouse; her, with her life? There's nothing we can't do. That's the one thing.
And if someone ever assumes she can't or I can't, that just fuels us more to do it even stronger.
For her to sing the National Anthem in front of 40,000 people at the Cubs game last year, she learned the National Anthem. The words? She can read. She learned the words and memorized it when she was about five.
It took her another ten years before she was able to teach her muscles to properly articulate every word to that song, to build up her core, so she would have the air to blow that out, to get those words out there beautifully. Or she's not going to do it, if she's not going to do it right.
She did it. She set her sights on it, and she did it. So I think for us to say that someone's not capable or someone can't do something, I think those would be the words we can never hear, and we should never do. I live in a self-fulfilled prophecy, and I think it works both ways.
When we say, "I can do this," and when you say, "I can't do this," or "My child can't do this." It's just willing bad energy, telling them they can't do something. We all can do it.
Guy Kawasaki:
I've learned that prenatal testing can be much further out these days. So you could, more or less, know that your baby has Down Syndrome.
How do you feel about that?
Nancy Gianni:
We have many families, and they find out like before the three-month mark now. So the testing that's being done now, we find out much earlier. People are coming to us earlier and earlier.
They'll come to us straight from the hospital. Some of them, straight after the diagnosis, some stay home. They're devastated.
It's scary. It's a scary diagnosis. It's not something, you're like, "I hope I get a kid with Down Syndrome." It's scary.
Like I said, for those doctors, I understand. Textbook Down Syndrome is not something you would will on somebody. But you know what? There are so many beautiful gifts and beautiful parts to it.
And you know what? This is what gets me, Guy. Right before COVID, we had a pregnant mom that came in. She brought her other kids to participate in the program so she could... Kids don't judge other kids. That's learned behavior. The kids were in there playing and she was watching the siblings play with the other siblings, and playing with the kids with Down Syndrome.
It's just a crazy, awesome, fun place, and her daughter was loving it. Her biggest fear was, she was seven months' pregnant, "Are my kids going to see this discrimination against them?" And we don't sugarcoat and we don't lie at GiGi's. I said, "They absolutely are, and it starts early. But you know what? It's also going to grow them into the most amazing human beings."
I could have never made my kids who they are today without GiGi and everything that they have seen through her. And-
Guy Kawasaki:
Walk me through this.
Nancy Gianni:
Go.
Guy Kawasaki:
Your other kids face discrimination because of GiGi?
By what logic should they face discrimination because of a sibling?
Nancy Gianni:
Yeah. GiGi is the one who really faces the discrimination. Yeah. She faces it. They are the ones who fix it, who have to step in, who have to stop people from hurting her and making fun of her, that kind of stuff. No, no, no.
The discrimination that my kids saw is what made them who they are today. Why they protect anybody, welcome anybody. We accept everybody as they are. That's 100 percent. That is what GiGi's is. That's what Generation G is.
Our mission at GiGi's is to change the way the world sees Down Syndrome and send a global message of acceptance for all, and that's the most important thing that we do. That happens because of what we see.
I remember when that mom said that to me. It's a brand new mom, a pregnant mom. I want to protect her and say, "No. No. It's going to be great. She's never going to be made fun of. No one's ever going to do that."
But we can't sugarcoat something that's going to happen. Unfortunately, it does happen. We let her know. And we don't tell somebody, just so they don't terminate, that it's going to be easy.
That's not what GiGi's is about. We tell them that, "These things are going to happen. We are going to be there for you every step of the way. We are going to give you all the tools you need to survive and help your child succeed in life, and you're never going to be alone in this diagnosis."
We don't make it simple because it's not simple.
Guy Kawasaki:
What has GiGi taught you about raising children that your other children didn't teach you?
Nancy Gianni:
A whole new form of patience. A whole new form of patience.
Yeah. I'm not very patient. And with our kids, you give them the extra time that they need, and they're going to get things done.
It's not like you say, "Get your shoes on. Get in the car. We got to do"... It's going to take them a little bit longer. The fine motor skills to be able to even put your seatbelt on. You know the things that when you throw all the kids in the car because you got to go? You're not able to do that as much. You can, and they will do their best.
But it taught me to just slow down a little bit, to see life in a different way. I think with my other kids, I was excited in the way they saw life, but I didn't have to slow down to see it with them.
With GiGi, it's a slower pace, and it's a beautiful pace. She's taught me to appreciate jumping, to see kids in a park that can jump. And made me want to go tell their parents, "Do you know how lucky you are? Your child can jump, and that just came natural?"
She taught me this unbelievable appreciation and gratitude for the life I have and the way my body works and the way my other kids' body work. Because she has to work so hard for that.
So I think she's taught me patience and just unbelievable gratitude. Gratitude.
Guy Kawasaki:
Gratitude towards whom for what?
Nancy Gianni:
I would say gratitude for life.
I thank God every morning when I wake up, that I'm here to help her and fight for her, and I'm proud to be able to do that. I'm thankful for everything that I have. I'm just so much more thankful than I think I was before because I think I took things for granted before.
Whereas now, I don't take things for granted. I don't take a smile for granted. I don't take friendships for granted. When someone wants to be her friend, that means...
My other kids had multiple friends. They came and went. When someone wants to be GiGi's friend, they choose to be friends with her, even though other people aren't.
I have such gratitude. I've met nothing but amazing people.
GiGi's is 99 percent volunteer-run. We have tens of thousands of volunteers, and these are all the most amazing people in the world. Where would we be without them?
That's where all this gratitude comes from. Everything that people that are out there that will give, give.
Guy Kawasaki:
Now, walk us through the genesis of GiGi's Playhouse. How did that come to be?
Nancy Gianni:
I was carrying her to bed. She fell asleep downstairs and she was fresh out of open-heart surgery. She was probably, I think, about five months old at that time.
I had been to these support groups. I'd been to different places, and I knew I wanted to do something in Down Syndrome, but not sure what it was. And I picked her up to carry her to bed that night, and I just remember feeling like this tremendous weight.
With my other kids, they kind of held themselves up with their muscle tone. With her, I felt the tremendous weight of her body, and I realized she carried that weight around every single day and she did it with a smile on her face. She did it with determination of life.
She was such a happy baby. You'd never know she was walking around, that this low muscle tone was pulling her down every day. And I remember when I laid her in her crib and I felt that low muscle tone, I promised her that I would change the way the world saw her and all of her friends with Down Syndrome.
And I remember I didn't know how I was going to do it. And at that time, I was thinking, "Maybe I'm just going to raise a bunch of money and maybe... I've always been good at fundraising and making money. Maybe that's what it's going to be."
I had no idea, in that moment, what it was going to be. But I knew it was going to be something. I made that promise. I put it out there to the world and now people are helping me make this promise come true in communities all across the country. And all across the world, people are being served by GiGi's Playhouse now.
So that one promise. That one, really feeling that low muscle tone and understanding what that weight meant to her, how it pushed her down, just pushed me up.
Since that day, people help me make that promise to come true. It was a promise from me to her and the rest of the world has picked it up and they are picking up all of our kids.
So that's where it all began, with a promise, brother.
I'm just not a negative person. I remember I was going to a support group meeting. My brother Joe was like, "Oh, don't go to a support group meeting. You're the most positive person I know. You don't need support. You just need to keep going and doing what you're doing." I go, "Joe, I don't know anything about my baby. I don't know anything about her. I need to learn. I have to educate myself more on this."
And I went to the support group meeting. And it was like in an extra room in a hospital, not a very positive place. But positive people. What went on in that meeting was great. It was just the scene we were in, and that just kind of brought you down.
Like Gi's was in the middle of going through open-heart surgery, so we were at the hospital a lot. There were other things going on. The last place I wanted to be was a hospital. I remember sitting in that room, but listening to some really cool parents that were positive about their diagnosis.
I sat there thinking, "What if there was a place? What if we just provided a place that was full of energy, full of empowerment and full of potential, so that new moms... So you didn't feel that weight of the diagnosis, but you felt hope and you felt like, 'I can do this. I got this.'"
That was kind of how GiGi's was born. There was a couple more things that happened but then it was...
We opened a year later. We opened right after her first birthday. For her first birthday, we did the first fundraiser, and then we opened our first location in Hoffman Estates, Illinois, a suburb of Chicago.
It's crazy.
Guy Kawasaki:
You have over sixty locations. How did you grow?
I can understand making one, but how did you grow to sixty? That's quite an accomplishment?
Nancy Gianni:
That was that gratitude part that I was talking about. These amazing people who step up. Because not only do we have sixty locations and startups, but they're 99 percent volunteer-run, and we give everything away for free.
So all of our programs are free. Free literary tutoring, math tutoring, speech therapy, fitness programs, career skills. All of it's free.
The way the model works is, we scale it to these locations. We built the model. And it took us a while to get this model.
As soon as we opened the first location, I really opened it to make sure that my community understood Down Syndrome and that my kids would have a place to show their friends and meet other kids with Down Syndrome.
Because not all schools, a lot of times, kids with Down Syndrome are in a different school. They're not with the other peers. A lot of people haven't grown up or had the gift of growing up with somebody with Down Syndrome.
As soon as we opened and then there was this tremendous draw. Remember, this was 2003.
So like the internet was just getting started, just getting big. And all of a sudden, I went to a conference and GiGi's class had a table there. It was in Minneapolis, I think. We were the busiest table there, and everybody said, "How do we do this?"
We didn't realize then that having a website opened us up to the world as much as it did back then. We knew you need to do it, but the social media wasn't the world it was today.
So we started getting all these inquires to open more locations. That really forced us to build a model for these communities, that were coming together to open a Playhouse.
People come to us, whether it be a founder of a location.
Like in Nashville, Tennessee, it was a twenty-three-year-old teacher that said, "These kids deserve more, and they deserve a place to help us get them to where they need to be."
In Rockford, Illinois, it was a set of grandparents. We've had business people who have opened GiGi's.
What they do is they come to us with an inquiry. And we have different phases they need to get through.
It's not easy, because every GiGi's Playhouse needs to be sustainable. This becomes a lifeline for the families, so we have to make sure that they're sustainable, that they have a diverse Board, diversified funding.
There is a very strong business plan that goes around a GiGi's Playhouse. And remember, a lot of times, these are community... This is somebody doing this, a community member that might not necessarily have those business skills.
So we have to give them all those tools, all those shared platforms. And they take that. We get them to phase three.
Phase three, they become their own individual LLC, like GiGi's Playhouse in Nashville, and then they open their location.
The very first thing they have to do is engage their community.
So the beauty of GiGi's is you're not just there to serve the individuals with Down Syndrome. You're there to serve that community and teach them about love, and acceptance, and respect.
It's a magical place. What a gift from God, that people just keep coming in to open a location to change their entire community.
So at sixty, right now, has just been... Like I said, there's a higher power guiding this thing.
Me and GiGi are in the driver's seat, going, "Where are we going to today? We're going to spread some love, and we're going to make it happen." It's amazing what these people do all in the name of serving others.
Guy Kawasaki:
If someone wanted to start a GiGi's, do they just reach out to you? Do you have this down to a science at this point?
Nancy Gianni:
Yeah. In the U.S. We've got over eighty countries that want to start inquiries in countries.
We did open a Mission Playhouse in Mexico, and it's amazing. They need it there. They have a lower termination rate, so they have a higher population of people with Down Syndrome. They still hide the kids with Down Syndrome. They hide them away. They needed a place. They probably need about five more over there, but it's just such a hard country to build these in.
We would love to help the other countries. But right now, in the U.S., is where the business model works the best. And there's so many inquiries here, that we...
You know what we do for the other countries?
Actually, when other countries call, we give them our programming. All we want to do is help people be the best possible person they can be. So we'll share our programs with the other countries, until we're able to successfully have that international model.
It's the currency. It's the taxes. There's so many different reasons that we haven't been able to do it yet, besides Mexico. And we need to do it.
But like our GiGi's at home, when COVID hit, we had to take all of our programs virtual.
So we do about 4,400 program hours a week, per week, at GiGi's across the network. So that's free therapeutic. That's free tutoring, free literary program, free speech therapy. All these free hours of programs.
So when we had to cancel all of our programs, the families were devastated. So within ten days, we were able to go virtual.
We took multitasking to a whole new level. My team just jumped in. We did whatever it took. Our families, all of us, the whole world was like, "What's happening in the world?" And then you add a diagnosis on top of that.
Now the family's not only at home with their own kids, while they're working, they have a child with a twenty-four-seven diagnosis. Like they needed us, and we needed to still be there for them.
Our adults needed us. There's not a lot of places for them. There's not a lot of jobs for them. Like you said, you don't see them, because there's not a lot of jobs out there for them. There's not a lot of schooling out there for them. So they needed these programs.
So we started GiGi's at Home, within I think five days of us closing down.
We just found out the other day, that people are using our GiGi's at Home programming in over twenty countries right now. Isn't that crazy?
Guy Kawasaki:
Describe your technology? How do you do this?
Nancy Gianni:
It's crazy. Absolutely amazing teams, and amazing volunteers that really made that happen.
We didn't even know until we checked our IP address. We just put it out there for people to use. We put it out there, but we have to be very careful, because we need to keep it safe.
Families need to be able to go on there and know that their child's going to be safe on that virtual program and that they're protected. It takes just as many people to run our programs virtually as it does to run them in our Playhouses.
And what a gift, that our volunteers, on top of everything else that's going on for them... Because now their kids are home and they're working from home. They are still stepping in and serving these families even virtually with us now.
Guy Kawasaki:
Are you using rooms with Zoom, and that's how...
Nancy Gianni:
We use GoToMeeting for the general... For like our fitness and our bigger programs.
For the one-on-ones, we're actually using Microsoft Teams. So we do one-on-one tutoring and literary and math, and then one-on-one speech therapy. All of that is being done through Teams.
It has been quite an adjustment these last couple months. It's always bothered me that we weren't able to... We always responded to the other locations across the world that wanted to open, and said, "How can we help? We've got this literacy program. Does this help?"
But now, to know that twenty of them can now use the programming virtually and help their families is just amazing.
And the number one, outside of the U.S., that's using it is Nigeria. And they've been trying so hard to open up... They wanted to open a Playhouse there for a long time, and it's always like... It's been always in my heart like, "How are we going to make this happen? How are we going to make this for Nigeria?"
And again, I believe in self-controlled prophecy. Now this is the first step. Now they're getting it virtually. And they're smart. They're taking advantage of it. All that free programming, why would they not?
Guy Kawasaki:
I understand having sixty locations. So now you have fifty-nine more places where people can go.
But now, with everything virtual, do the other fifty-nine have their own virtual programs? Or is everything centralized into yours?
Nancy Gianni:
Yes. A little bit of both. So we do live programming each week. So there's live programming all week.
Since it started, we've done over 1,500 live programs, how many hundred per week of live programs that we're doing. And then we have over 300 On Demand programs. So people can come and do the live programs with people, or they can come on their own time, and do the On Demand programs.
Guy Kawasaki:
When you say "we," do you mean we, the original GiGi's or we, the sixty?
Nancy Gianni:
The network. So GiGi's Inc. We call GiGi's Inc. is kind of like the mother.
We put together all the programming, and we put together all the platforms. We give them all the tools they need, and then they give it out to their families. That's how they're able to be 99 percent volunteer-run, because all of the platforms are there.
The security is there. Everything they need is there to run their programs safely and successfully within their Playhouses. But now also virtually.
Can you imagine? We've had over 250,000 people visit our GiGi's at Home website, and we only launched it at the end of March. It's just crazy where GiGi's at Home is going.
I think because we had planned on launching our GiGi's App, and the LMS was in our 2021. We were getting the funding this year. We're working on it for 2021. And really what it did, it made us expedite all of that, but it also kind of built it backwards, because what we needed...
We did phase one of our App, but phase two of our App was actually getting all the programs to be automated and we did that, by necessity, for GiGi's at Home. So we actually built phase three. So now we've just got to put together phase two.
And then we have our entire App, that we thought was going to be a few years away, with full-on programming.
It's so crazy.
Guy Kawasaki:
So now is it happening that a family in Nigeria is having peer counseling from someone in the United States? Or how does that work?
Nancy Gianni:
You know what? They go in.
They RSVP to a program, an orientation. We do volunteer orientations. We do tutor training. All of that is done virtually now.
So they can come in and learn all of that from Nigeria, from wherever they are. They are required to RSVP, because we have to track everybody who comes in and who has access and all of that.
But, yeah. They are getting all of the same things.
And it's pretty cool. New family orientations, we used to do them like... It would be at your local Playhouse. All the new families would gather. We'd have a dinner and a party or whatever.
And now the new family orientations are being done online and we're having other families that want to join the new family orientation. Maybe Nashville is holding one and then somebody over in our San Diego is like, "I'm a new family. My baby's the same.”
Like people are connecting through all these new family orientations, just in different ways.
And GiGi's is so empowering. And watching, like you could have a mom come in, deer in the headlights look. This diagnosis, "I don't know what I'm going to do."
The average age to have a kid with Down Syndrome is twenty-eight, so a lot of our families are first-time parents. All of their friends are having babies, and then you have a baby with a diagnosis. Your baby's not like their baby. There’s different things going on, different milestones, when they're happening.
So walking into GiGi's, it's usually the deer in the headlights. They're petrified to do it, even though they know it's positive.
It's still hard, because you're taking on a twenty-four-seven diagnosis that you're going to have the rest of our life. This isn't going away. So taking that first step is hard.
Then once they do it, it's like they walk out of there a different person. They walk out of there empowered. They walk out of there knowing they're never going to be alone.
But the beautiful part is, when they come back next week, they are doing that same exact thing for another person. It's crazy. Like all of a sudden, they're the expert.
It's such an incredible gift to watch the transformation in these families going from total fear to warrior.
It's so awesome. And then they take that and they give that to that next mom, and they give that to that next dad. That's the beauty of GiGi's.
That's why we're always still going to need our brick-and-mortar locations, because they're so important.
That contact is so important. And a place of pure acceptance? There's not many places like that in the world. And to walk into a place built on acceptance, and pure acceptance.
Our brick and mortars are always going to be needed, but now we have another way of serving families, that we didn't have before.
We have a boy in our Detroit location, whose mother's in a wheelchair. He's eighteen years old and he has Down Syndrome. He's only been to our Detroit location I think two times, because his mom's in a wheelchair. They live an hour and a half away.
That Lucas is in probably four programs a day. I bet if I was to text his mom, she's be going, "Oh, he's in GiGi's in the kitchen, making chicken fried rice." He literally has this new life. His mom said, "Oh, my God! He saved his money. He bought a guitar for GiGi's music. He's learning to read. He's on his own. He's in every Live.”
When you go into a Live, you know Lucas is going to be in there working out or doing whatever program it is, he happens to be in. It's given him the empowerment. He doesn't have to depend on his mom who’s in a wheelchair anymore.
And he has friends. He has friends from all across the world. He's no longer sitting in his house alone.
So many beautiful gifts have come from COVID. It's amazing watching what we... I don't think we could have made this happen, if we didn't have to make it happen in that moment.
Guy Kawasaki:
Can you summarize your advice to parents trying to navigate parenting a child with Down Syndrome?
Nancy Gianni:
Yeah. I think the number one thing I say it, and I say it all the time, is have high expectations.
Don't fall back on the diagnosis as an excuse, because it's not. It's just a reason to have to work harder, but it's not an excuse.
There's nothing our kids can't do. It's amazing. But you cannot say, "My child, oh, he won't sit for more than five minutes." Yes, he will. You have to have that expectation. And you know what? In a place like GiGi's Playhouse, it's okay if he doesn't sit there for the first five minutes. But you know what? He will sit there five minutes, and we'll help him. And then we'll get to seven minutes. And then we'll get to eight minutes.
And pretty soon he's going to be sitting through that whole literacy session, and they do. But you have to have that high expectation.
Do not get knocked down by what it says in the books, with the doctors. Doctors tell our families that our kids won't walk. What are you talking about? Don't get knocked down by... And I don't mean all doctors. I don't want to say, because there's so many amazing doctors out there.
But still have people that are understanding that our kids can and will do anything.
And before we do that, I do just want you to see GiGi and meet her.
I'm telling you, she's the biggest poser. The most unbelievable person you're ever going to meet in your life.
And she is going to inspire you to do the right things, brother. You already do the right things. But I'm telling you, when you talk about remarkable, she is a remarkable person.
She knows when she's supposed to step up. She knows that God put her to give a voice to a population of people who deserve it. And I can't wait.
You guys are going to meet some day. Where do you live again?
Guy Kawasaki:
I live in California. Where do you live?
Nancy Gianni:
Okay. We're in Chicago. But we're opening in Sacramento...
Well, as soon as COVID lets us, our Sacramento location will open. And we've got one in San Diego, and one coming in Orange County.
Guy Kawasaki:
That's great. That's getting closer and closer to me.
If you had a magic wand, what is one, or a small number, of things that you wish everybody knew about Down Syndrome?
Nancy Gianni:
Is that individuals with Down Syndrome are such strong, amazing people.
I do think that sometimes people think they're weak, because things are harder for them, but they figure it out. They get it done.
I just want people to know how strong they are, and that they have feelings just like you and I. They're not that much different than us.
They just have low muscle tone and they have so much to give. So much to give. I think that that's my number one.
We wouldn't have tens of thousands of volunteers if they weren't getting something back.
Guy Kawasaki:
Off the path here, you were named a CNN Hero.
Nancy Gianni:
Mm-hmm (affirmative).
Guy Kawasaki:
What happens when you're named the CNN Hero?
You don't need to make reservations at restaurants anymore? United Airlines upgrades you to first-class? What happens when that happens?
Nancy Gianni:
No.
You know what? What I loved is that the CNN Heroes logo has an "S" on it. CNN Heroes. So it always has that "S" on it.
Because it's not me. It's not GiGi. It's everybody who steps up at GiGi's Playhouse. We're all heroes together in all of that. There's not one person.
So I love that that logo has an "S" on it because I think that's important. It's never one person who does something like this. It's everybody coming together for the greater good. So that was the number one thing.
But no. I wish it would get me into some restaurants. That would be nice.
Guy Kawasaki:
Did donations kick in? Did anything...
Nancy Gianni:
You know what? Do you know what, Guy? That's such a good question.
I will tell you something, they did. And what happened was it gave us a lot of credibility. Because when you're vetted to be a CNN Hero, they already talked to my eighth grade teacher.
Like they went back years to see if you've ever done anything wrong. I was really, really surprised at the vetting process and how far it went. How many people came to me later saying that they got calls.
Guy Kawasaki:
Really?
Nancy Gianni:
I was shocked. Really where they went with that. It was an unbelievable vetting process. Now I see why. It did pick us up.
We did get instant credibility for GiGi's. That was instant credibility, because it was an incredible vetting process, but it did help us immensely.
It helped us in marketing. It helped us in donations. Stuff like that.
To be able to have our name associated with somebody positive like that was really huge for us, and still is. It still continues to be something that people talk about, which is crazy, and awesome.
Guy Kawasaki:
This is my last question.
What can a listener do to help you?
Nancy Gianni:
I would love it if they would learn about us. Go to our website. They can volunteer. They can donate. They can just look around and feel the positive energy, so that they will go out and be advocates.
The most important thing any of your listeners can do is accept us. Just learn about us. Go look at GiGi's at Home. Go look. Look at some of our videos. Look at the amazing accomplishments that our kids are doing. Every day, they try to prove themselves to be accepted.
So to me, I'm sure the first thing I should say is donation. We're run on donations, private donations. We don't get any government or state funding, and we do everything for free.
But what means the most to me is that our individuals are accepted and respected. And so just getting to know our organization and our kids would just be the biggest gift.
Guy Kawasaki:
That's fantastic.
I want to tell you, and I mean this as the highest form of praise. That I have conducted roughly forty interviews for the podcast. This is the interview I have spoken the least.
Nancy Gianni:
I know. I'm sorry.
Guy Kawasaki:
No, no.
Nancy Gianni:
I know I go on tangents.
Guy Kawasaki:
I can't tell you how happy that makes me, because this podcast is not supposed to be about me. It's not Guy Kawasaki's podcast. It's Remarkable People's podcast.
So I can't tell you how happy I am about that. If it was up to me, I would never be on it at all. I would be just like, "Okay, here's Nancy."
Nancy Gianni:
Well, I kept telling myself, "Stop talking, stop talking."
Guy Kawasaki:
No.
Nancy Gianni:
Yeah. I just want to thank you for the opportunity to be able to give a voice to our kids and to our families. It's really an honor.
When I looked at all the people you've interviewed, I'm like, "Why is he talking to me?" I feel so blessed and honored. So thank you so much, Guy.
You're spreading great stuff and we're lucky, and so blessed to have you. Thank you for having me like here. This was huge.
GiGi, come here!
Guy Kawasaki:
Oh. This is going to be another screenshot. We've got to get her.
Nancy Gianni:
Come here, and say, hi. His name is Guy. Come here. There she is.
Guy Kawasaki:
Hi, GiGi.
GiGi Gianni:
Hi.
Nancy Gianni:
That's my Zoom.
Guy Kawasaki:
I just talked to your mom for forty-five minutes and I am truly exhausted.
Nancy Gianni:
I talked his ear off, Gi.
GiGi Gianni:
Good.
Guy Kawasaki:
Come closer, GiGi. Let me... I'm going to take a picture of you. Come closer.
Nancy Gianni:
Come closer.
GiGi Gianni:
I'm here.
Nancy Gianni:
Do you know where he's at?
GiGi Gianni:
No.
Nancy Gianni:
Come down a little, so he can see. It's in there. Do you know where he is?
GiGi Gianni:
Where?
Nancy Gianni:
California.
GiGi Gianni:
Oh.
Nancy Gianni:
We love California.
Guy Kawasaki:
Yeah. Well I hope you come visit me.
Nancy Gianni:
Yes.
Guy Kawasaki:
Have you ever been surfing?
GiGi Gianni:
No.
Nancy Gianni:
No.
Guy Kawasaki:
Okay. We'll fix that.
Nancy Gianni:
We need to try that.
Guy Kawasaki:
When you get to California, we'll fix that.
Nancy Gianni:
Yes.
Guy Kawasaki:
Just come close to the camera and we'll take a picture. Okay?
Nancy Gianni:
Get closer, Gi.
Guy Kawasaki:
I'll go 3, 2, 1. 3, 2, 1. Okay. So thank you so much, Nancy. Thank you very much, GiGi.
Nancy Gianni:
Thank you, Guy.
Guy Kawasaki:
My best to both of you.
GiGi Gianni:
Yeah.
Guy Kawasaki:
Thank you.
Nancy Gianni:
I totally appreciate everything you've done. If you need anything else, let me know.
Guy Kawasaki:
Okay.
Nancy Gianni:
Sorry about my mic issues.
Guy Kawasaki:
That's okay. Thank you very much. Take care. Bye-bye.
Nancy Gianni:
See you later, bye.
GiGi Gianni:
Bye.
Guy Kawasaki:
It's Review time. This is from Ath Valley:
"Guy Kawasaki is a remarkable person in his own right, and so it should surprise anyone that he figured out a theme for a podcast that lets him interview a wide range of other remarkable people."
I think she or he left the word "not" out in that sentence.
"When I heard this about this endeavor, frankly, I was jealous because Guy is getting to meet all these amazing people. I was intrigued, of course, but also worried that Guy, being Guy, might somehow interfere with him bringing out the essence of his guest. Wrong. Guy is unafraid of being in awe while in the presence of greatness, and is willing to express it. So in fact, we get to enjoy the authentic thrill of him meeting these amazing people, being humbled in their presence, and being himself, which means that he doesn't always know their fields in-depth, but makes it feel like we're there with them. His interview with Chris Bertish, you could almost feel the swells and sharp bumps. It was brilliant. Thank you, Guy."
Thank you, Ath Valley. And here is one more. Kathy Lee Chong:
"Guy is terrific because he sees the world and the people he interviews through the perspective that perfectly blends wisdom, life's experiences, optimism, and skepticism. No wonder he's such a successful entrepreneur, author, influencer, and now podcast director. Awesome, Guy. The interview with Dr. Kim and things on COVID-19 was fabulous. I learned so much."
Thank you, Kathy.
I'd love to read your reviews. So please go to the Apple Podcast App. Find Remarkable People, and write a review, and maybe I'll read it next time.
I hope that you found Nancy's dedication to helping people with Down Syndrome inspiring and remarkable.
If you'd like to help GiGi's Playhouse, go to gigisplayhouse.org.
I believe Nancy when she says that the experience of working with people who have Down Syndrome is beneficial to everyone.
My thanks for Janet Viane for suggesting interviewing Nancy, and then for actually making it happen with an introduction.
My thanks to Jeff Sieh and Peg Fitzgerald for their usual remarkable job.
I'm Guy Kawasaki, and this is Remarkable People.
This is Remarkable People.