When 17 year-old Ava Shah strode to the Être TED-Ed mic two weeks ago, she had more on her mind than giving the outstanding performance you see here:
Click Image to Play Video
She knew that in a matter of days her first book, Case Alzheimer’s, would drop and that her mission, to demystify dementia for the next generation, would take on a new level of meaning.
Designed as a “science-backed, spy-themed adventure that replaces fear with empathy for families navigating Alzheimer’s,” illustrated by fellow teen Carlie Cohen and endorsed by leaders like Teepa Snow, MS, OTR/L, FAOTA, Lori La Bey, Alice-Kate Lamb and Anke Hofmann, Case Alzheimer’s releases this month in time for National Alzheimer’s Awareness Month.
All images courtesy of Ava Shah
I was lucky enough to get an early look at the book and then to chat with Ava Shah about her literary journey, and I am more than impressed. I’m inspired.
Below is an edited version of our conversation this weekend. I couldn’t be prouder to share Ava’s words and ideas as she brings them effortlessly from the TED-Ed stage to the YA page. For anyone touched by Alzheimer’s in their family or community, this book is what the next gen needs right now.
IR: Okay, this book is amazing! It's clever and so special – and I love that it relates so closely to your TED-Ed talk! How did you come up the with the idea to turn a topic like this into an incredibly cool interactive adventure story?
AS: Thank you! So, I grew up listening to a podcast called Wow in the World, created by Guy Raz (from How I Built This). I was always super passionate about science because of that show and the way they took complex concepts and turned them into missions. The character, Mindy, would turn everything into an adventure...it was just really fun and engaging and it helped science make sense.
Later, when my grandfather was diagnosed with Alzheimer's, it was really hard for my younger cousins. I'm the oldest of so many younger cousins – seriously, I’ve changed so many diapers in my life - and Alzheimer's wasn’t just something that was impacting my grandfather. It was impacting all of us. I saw that my younger cousins were scared of my grandfather as his behavior changed.
IR: They couldn’t understand what was happening.
AS: Right. What we tend to do as society is to bar children from those tough conversations…because we're scared that they're going to take it the wrong way or be upset. But I think kids, in general, have this incredible emotional intuition, and they know when something is wrong. There had to be a better way to explain it to them.
IR: And you found it! So, when you showed the book to your younger cousins, what was their reaction?
AS: They absolutely love it. We used to make our own stories together; my grandfather had always taught me that storytelling is a very important part of being together. In fact, when I lived in India with him for, I think, three months, every night we would come up with all these new stories like spy stories and mysteries - I kind of did a very similar thing, using that storytelling.
IR: Oh, I love that!
AS: Then, I did a little bit of digging. I've taken a couple of neuroscience classes and learned more about the function of the hippocampus. The hippocampus plays a huge role in Alzheimer's because it's all about memory and losing our memory specifically, so that's kind of how Case Alzheimer's came about. Since creating it and showing it to my cousins, we've had all these discussions and it’s much more understandable.
IR: Plus, you have the interactive function on your website, right? Where you can hover over certain parts of the brain – it’s fantastic. Are you going to do more of that… gaming it out as you continue with the website?
AS: Yes, and right now we're working with a couple of experts in the dementia sphere. My mentor, Tipa Snow, she inspired me to do children's educational videos! We’re hoping to do some type of partnership with her, putting up videos that are very educational and there's a game right now too. I'm hoping to make that even more interactive, so kids can go through it and really explore the whole brain.
IR: Incredible. Okay, last question: if you could tell one kid who has a member of their family (or someone they're close to) with Alzheimer's one thing right now, what would you say?
AS: I think it's that they know you're there. When your grandparent has Alzheimer's, even though it might seem like they don't remember who you are or they might feel a little confused sometimes…trust me, they know you're there.
I do trust her – and every young reader should too.
To watch Ava’s TED-Ed talk, click here or on the first image above. And to order her book, keep an eye out here for pre-orders or stay watching this newsletter – we’ll be sharing links asap.
Big ideas can start from anywhere: intergenerational storytelling, a TED-Ed mic or a gorgeously illustrated book. And there’s nothing better when those ideas knit us all even closer together.
Case closed.
Looking forward,
Illana
ÊXTRAS: Three more things about Ava's book launch journey you won't want to miss: Pillar Project, the non-profit Ava powers, ways other Gen Z members can volunteer, and more about the book's next steps here.
