AJ Tesler

Original Air Date: June 16, 2024

AJ Tesler is an award-winning producer and director who has created thousands of hours of content on Netflix, Comedy Central, Lionsgate, MTV and Sony. He just launched a new video series called “Magnolia’s Guide To Adventuring”, inspired by his own 13 year old daughter, Magnolia, who has a rare disease called Rett Syndrome. Non-verbal and not able to use her hands, Maggie has more adventure in her than most of us!

Episode Transcript

(00:00):
Welcome to Sunstein Sessions on iHeartRadio,conversations about issues that matter. Here's your
host, three time Grasie Award winner, Shelley Sunstein. I want to wish
all the dads out there a happyFather's Day. And actually we'll be speaking
this morning with two dads, AJTesler, and award winning producer and director.

(00:24):
And then afterwards we're going to meetup with an old friend of mine,
DC Dave Servini, who I workedwith way back in the day when
Jim and I were doing a morningshow on a country station that no longer
exists. It has since become WKto you, so you know how long
ago that was. But first letme reintroduce you to AJ Tesler, as

(00:49):
I said, an award winning producerand director. He's created thousands of hours
of content for Netflix, Comedy Central, Lionsgate, MTV, and Sony,
and he has just launched a newvideo series called Magnolia's Guide to Adventuring,
inspired by his own daughter Magnolia andher experience and the whole family's experience actually

(01:11):
with the rare disease ret syndrome andtrying to normalize her life, which I
just love. But first, AJ, welcome back. Happy Father's Day?
Or are you doing anything special?Thank you, Joey. It's a pleasure
to be back on the show andexcited to share the story and talk about

(01:32):
the show. Am I doing anythingspecial for Father's Day? I'm actually supposed
to be going to Florida to visitmy own father for Father's Day, but
I'm not sure that the weather's goingto allow me to do this. Oh
man, yeah, I mean themonsooning down there. All right, let's
talk about magnolia and ret syndrome.I had way back, and I had

(01:56):
heard of red syndrome, but Ireally wasn't familiar with it till I spoke
with you the first time four yearsago. Explain to the audience what it
is that magnolia and your family isdealing with. Well. Red Syndrome's a
rare neurological disorder. It affects mostlygirls and sometimes boys, and it is

(02:19):
often like in two epilepsy, cerebralpalsy, and autism all rolled into one.
Kids start developing typically and by thetime they turn two two and a
half they start to lose the skillsthat they've learned. So my daughter lost
the ability to speak. She hadtwo word sentences when she was two and

(02:39):
now doesn't have really access to anyverbal language at all. She lost most
of her functional hand use. Alot of kids with Red syndrome ended up
in wheelchairs with feeding tubes, haveseizures, stabilitating the anxiety, require twenty

(03:00):
four hour day care. We're fortunatelymy daughter has remained strong and is still
walking and is still healthy and stillhas a smile that can light up any
room. And for that, we'revery grateful and excited that she continues to
push us to do things that areoutside of our comfort zone and communicates in

(03:23):
the ways that she can communicate thosethings. How old is Magnolia? Now
she's thirteen? Now how do youcommunicate? So she uses a couple of
different techniques to communicate. Partner assistedI gaze is one way that she communicates,
where she'll look at you and smileto signify yes, she'll look away

(03:45):
for no. And she also hasan I gazed computer device where she can
actually trigger pictures on a screen withher eyes that will generate a computer generated
voice. And she's chosen to beBritish because she wants to sound like hermione.
I love that. So, howdid you come up with this idea

(04:06):
of adventuring. Was it your idea? Did you or your wife just come
across these programs? I think thatwhen we were in California and it was
summertime when we were looking for somethingto do, we discovered an adaptive surf

(04:28):
program, and you know, wespent a lot of time talking to them
about it and trying to understand howthey were going to do this with a
girl who didn't have a lot ofhand function, couldn't stand up on her
own in these kinds of conditions.And the experience when we finally decided that
it was going to be safe andit was something that we wanted her to

(04:49):
try and she wanted to try,the experience was incredible. And then there
was another dad that of a girlwith red syndrome, who unfortunately has since
passed away, and he invited usto Mammoth Mountain to go skiing with them

(05:11):
and through the adapted ski program there. And so it's through kind of these
two different activities that we really learnedthat anything was possible, as in,
whatever Maggie wanted to do and whatevershe wanted to try, it was up
to us to try to figure outhow to do it. And we've been
doing that for ten years now,and when we started thinking about, like

(05:39):
how do we get the word outabout this stuff and how do we continue
to share our experiences. Mikatia wasgracious enough to support us in this effort
and we were able to come upwith this series. And it was Maggie
and my whole family that really suggestedthat we do it. You know,

(06:00):
it was it was. It startedas an idea, led to a conversation
and then ultimately to a pitch andand here we are today, seven episodes
having been filmed of a variety ofdifferent adventures and three more to come.
And you're talking about a Katia Pharmaceuticalsthat is basically financing this. So what

(06:26):
tell us about some of the otheradventures And have there been any that Maggie
didn't want to do or had tobe talked into encouraged. No, the
truth is that she is the onewho's driving all of this, and there
are a lot of them that Idon't want to do and that sound hard

(06:48):
to me, that are going tobe hard for me. We did a
cross country skiing episode, and wehave never been cross country skiing, so
we had to like imagine how wewere going to do it in a way
that Maggie could enjoy it, andshe had a blast, mostly because we
were falling down the entire time.The we've been in ATVs on safari in

(07:16):
Texas, We've we've gone ice skating, we've gone horseback riding, we've done
swam with dolphins. We're going surfingagain and water skiing, and all of
these things are things that there areorganizations around the country that do these types
of things. And you know,if a medical professional says that it's okay

(07:38):
for you to do these things,then I would encourage anybody with a complex
disorder to go out and try them, because it really doesn't open up your
world and show what's possible. Andthat's so much why we're doing these things
is like red syndrome is hard,and you never know what it's going to
be and you never know if it'sgoing to work out, but you go

(08:01):
out and you try it, andat the very least you create an incredible
memory, just like you would withyour typical kid. And it's the lessons
that my typical kid has learned fromwatching us do this are also immeasurable of
really teaching him. You know notto dwell on what you can't do,
but to get excited about what youcan. And how old is he?

(08:24):
Eight? A very vivacious, verycreative eight year old. I'm speaking with
Aj Tesler, an award winning producerand director. He's created thousands of hours
of content everywhere Netflix, Comedy Central, MTV, and Sony. And he

(08:46):
has a new video series called Magnolia'sGuide to Adventuring, inspired by his own
daughter, Magnolia Maggie and her experiencewith struggling with Red syndrome. How many
people in the United States have Redsyndrome and are you connected to them?

(09:07):
Is there a way of connecting tothem and others just in that overall community
of families that are struggling with,you know, serious disabilities. Yeah.
There are about three hundred and fiftythousand known cases of Red syndrome in the
world, so it's pretty rare.They say that it's about one in ten

(09:31):
thousand live female births per year haveRed syndrome. There are a number of
online communities through Facebook and through othersocial channels that are supportive. There are
organizations Red Syndrome Organization and the RedindromeResearch Trust that help support families and help

(09:54):
people understand what they're going through.There's and then there's events. There's all
kinds of things that bring people withred syndrome together because there really is a
shared camaraderie. And one of thethings we're doing with this series is bringing
another family with a kid with redsyndrome along this journey with us and helping

(10:16):
them through these kinds of adventures too, which may be something they've never done
or something that they do regularly buthave never done with another family with red
syndrome. And Maggie communicate enough tomake a friend, has she made friends
in this community? You know,it's pretty tricky when neither kid can actually

(10:41):
verbally communicate, but when you seethem together, when you see a couple
of kids with red syndrome together,there really is a connection in a bond
that you can see. I rememberus going to Tennessee on a trip and
we met up with another family withred syndrome, and Maggie and and the

(11:01):
Goodman's daughter. Blakely sat on asat on a park bench and watched the
playground and at the end of it, Blakely leaned over to Maggie and gave
her a huge it's very sweet,and I've seen that in all of these
episodes too, of Maggie wanting togive a hug to these other kids and
connect with them in a more meaningfulway. There really is that shared camaraderie

(11:24):
because you see somebody you know,I know what you're going through. You
know what I'm going through. Wemay not be able to talk about it,
but just like any best friends,we don't need to. I know
what you're going through. How canpeople see Magnolia's Guide to Adventuring? So
rehtt revealed dot com. That's re T T Revealed. R e v

(11:45):
e A l e d dot comhas our series of Magnolia's Guide to Adventuring.
There's also guidebooks that you can downloadso that you can go out and
adventure yourself as long as the doctorsaying it's okay. And then there's other
series and other Red syndrome awareness piecesthere as well. It's just so important

(12:07):
for us to share our story,to share what's possible and to share what
red syndrome is so that people learnabout it and can help, can get
involved in the cause. Do youthink that there are a lot more children
that may be suffering from this andit just goes undiagnosed because it mimics so
many other things. Like you said, it's a little bit of this,

(12:28):
a little bit of that. Whenit comes to symptoms, I do.
I think that there's a handful ofcenters in the country where there are red
syndrome experts. It can identify iteasily. There's a blood test now that
the test the genetic markers for redsyndrome, and that's how my daughter was
diagnosed, coupled with the developmental pediatriciansclinical observations. But I think that for

(12:52):
a lot of years before the genetictesting was even existed, there was a
it was misdiag knows to a lot. I'm sure that's true, and I'm
sure there are kids out there whotheir parents have never gotten a diagnosis because
they're in communities where they've never eventhought about retsindro before. And I hope
that through this series you might seesomething similar in your kid too and go,

(13:15):
oh, you know what, maybethis is something that I need to
continue to investigate. We only haveabout a minute or two left. What
else have we not talked about ajthat you'd like to convey to the audience,
You know, I think that oneof the big messages that we're trying
to get across about this entire thingand this entire experience is that when you

(13:35):
see somebody with red syndrome or anycomplex disorder, everybody discounts them, counts
them out. But for a secondwhen you see them again, just instead
of them assuming they can't do something, just imagine what if they can.
And that's really what this series isall about, is proving the doubters wrong
and showing that my daughter and otherkids like her have these incredible spirits if

(13:56):
you just give them a chance.Okay, I thank you so much.
Aj Tesler and your family is justincredibly inspiring, and what a career twist
you had that you probably never wouldhave thought of. You know, as
a producer and a director, youknow that you would be doing basically a

(14:20):
whole lot of good with this seriesand what you've done in the past,
again inspired by Maggie and your familyand your struggles. You've been listening to
Sunstein sessions on iHeartRadio, a productionof New York's classic rock Q one O
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