Episode Transcript
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Speaker 1 (00:00):
Welcome to Sunstein Sessions on iHeartRadio, Conversations about issues that matter.
Here's your host, three time Grasie Award winner, Shelley Sunstein.
Speaker 2 (00:10):
Those of you who are regular listeners of Sunstein Sunday
know that some of these shows just kind of happen organically,
and this is one of those situations. Claudio Lescano reached
out to me and he actually used to work with
me here at Q one oh four point three. And
(00:31):
oh he's a great guitarist and he's really into Van Halen,
super into Van Helen. I am sure he's going to
buy Alex van Halen's book Brothers and read his book
because it just came out days ago. So Claudio reaches
out to me from time to time to fill me
(00:52):
in on what's going on in his life. And he said,
I just had the best barbecue. What I have to
tell you about the owner of the barbecue, because he
is and that is John Cavallo, who is with me today.
And Claudio said, you have to talk to John about
the great work he's doing with the Tumbleweeds Foundation. And so,
(01:17):
first of all, John and also joining me today Megan Kinney.
And Megan came into John's life organically too. This is
what I love about these situations because sometimes things come
into your life and you could choose to do something
with it or not do something with it. And if
(01:38):
you choose to do something, you could be doing a
whole lot of good, which is what we're talking about today.
But John, what is the name of your barbecue place
and where is it? Because that's the one thing Claudio
didn't tell me. He just talked about the great barbecue.
Speaker 3 (01:54):
Well, I wish I saw Claudio jumping. The song ban
had if I was playing at the restaurant had been awesome,
but I didn't know that.
Speaker 4 (02:00):
Now I do, so when he does show up, he's
gona have his Engines music.
Speaker 3 (02:02):
But the restaurant is located in a Florida Park, New York,
and it's called Sean prey Famer Barbecue, which means always
hungry in Italian. So I'm actually celebrating my eleventh year
anniversary this Saturday on October twenty sixth.
Speaker 2 (02:16):
Oh, congratulations, thank you so much. Okay, So tell us
about how Megan came into your life and how that
changed your life.
Speaker 3 (02:27):
So, Megan came into my life, like you said, organically,
you pretty much hit it perfect. I ended up taking
a Stephen Ministry course in my church that I belonged
to to just try to learn a little bit more
about how to engage people with certain issues or whatever
it may be. So it's just a great back in heaven.
Her her mother was in my class.
Speaker 2 (02:47):
Wait, wait, back up a little bit, because I'm Jewish.
What is the Stephen Ministry?
Speaker 3 (02:52):
So stephen Ministry is like it's a lay care person
where I would be set up with someone one on
one to help them to overcome a loss of spouse
or a divorce or a job or really really anything
that could just kind of like click them off one
setting that you know, so they're not they're not the
their their usual selves. So I figured it'd be great
(03:14):
to just bring for the foundation to have a little
bit more knowledge and to just further, you know, take
my walk in faith. And that was that was the
route I went. And Meghan's mother was in the class.
So I never met Meghan or her mom until I
took that class. So Megan came into my life because
when all is said and done, we did a we
(03:36):
had a commencement and they asked me to do a
closing prayer. So in the class, we had these these
crosses that kind of symbolized our walk together. So I
ended up gifting every single one of the people in
my class with some words of adoration to them, and
I presented the cross and on that day.
Speaker 4 (03:58):
Prior to the commends.
Speaker 3 (04:00):
It was on ash Wednesday, when I first met Megan,
it kind of all hit and as soon as she
entered my life that day, I figured she was the
one that I was going to start my nonprofit with,
And in that ceremony I ended up gifting the last
cross was actually my grandmother's, which I inherited twenty years ago,
(04:21):
and I never spoke to Megan once until that afternoon
when I gifted her my grandmother's chirp, my grandmother's cross
in front of the entire congregation and asked for her
friendship at that moment.
Speaker 2 (04:36):
And what we have to explain here is that Megan
Kinney has a syndrome that frankly, I never heard of before.
I could not put a name to the syndrome, and
it's treacher Colin syndrome, and basically it's a rare genetic
(04:56):
disease that affects the development of the face and for
half of those who have Treacher Colin syndrome, they have
hearing loss. Megan, first of all, welcome, thank you for
joining us. So tell us. First of all, how old
are you.
Speaker 5 (05:16):
I'm twenty four.
Speaker 2 (05:18):
Okay, you're twenty four, So tell us. Tell us about
your struggles with Treacher Collins because a lot of people
could have an illness and people wouldn't know that you're
dealing with that illness unless you told them, because it's
not physical. Yours is a physical illness, and it can
(05:41):
be a real challenge and a struggle to deal with
this on a day to day basis.
Speaker 6 (05:50):
Well, I how to deal with the sisal's form, and
I think every day I learn how to cope and
learn how to to deal with other people's reactions. And
I think that it's given me a lot of who
I am that I wouldn't be without it.
Speaker 2 (06:13):
Did you go to public school? Did you go to
parochial school?
Speaker 5 (06:18):
What went to public school?
Speaker 6 (06:19):
And indicating it was hard to LoVa bullies and people
say things, but over time, I mean my friends and
again I realized that's all that matters is surrounding yourself
with the people who love you and care about you.
And to not let other people say about you derailed
(06:40):
your life or affect you.
Speaker 2 (06:44):
In It's even hard to ask you, but in what
way were you bullied and how did you deal with that?
Were the teachers responsive, Were the counselor's responsive, Yeah, go ahead, yeah, I.
Speaker 5 (07:03):
Mean, you know, typical bullying stuff.
Speaker 6 (07:05):
People would say things and pointed out, but the teachers
were always so great.
Speaker 5 (07:12):
I went to a religion all middle school where a
lot of the teachers would.
Speaker 6 (07:18):
Step in. They were always trying to make a safe
environment and a happy environment for me. And like I said,
just surrounding myself with the people who cared about me,
love me, It's all that matter.
Speaker 2 (07:30):
And how important is religion in your life.
Speaker 5 (07:34):
It's very important.
Speaker 6 (07:35):
It's it's I've grown up for Christian ever since, like
I said, you know, ever since I was born, and
it's helped me get through a lot of the struggles
in my life with the numerous surgeries that I've had,
and like I said, the bullying, and it's just always
been a huge factor into who I am and how
I deal with the treacher columns.
Speaker 2 (07:58):
Megan, do you work, I do I do work.
Speaker 5 (08:02):
I work on a dog taker.
Speaker 2 (08:05):
Oh oh see and that's great because the dogs do
not judge absolutely. Oh like just fall on love, right,
They just know who loves them.
Speaker 5 (08:20):
It's full on love absolutely.
Speaker 2 (08:23):
Oh yeah, Okay, I just want to recap if you
are joining us, I'm speaking with John Cavallo and Megan Kinney.
And John met Megan at a church ceremony and it
inspired him to form the Tumbleweeds Foundation. You can check
(08:47):
them out at Tumbleweedsfoundation dot org. And that's all about
helping children and adults with treacher colin syndrome. How has
this changed your life? John? And I know you have
an event coming up and I want you to tell
our audience about that.
Speaker 3 (09:02):
So I always try to try to find the best
in things, because you could always have a negative You
can always take a negative impact and then find that
positive impact.
Speaker 4 (09:10):
So when I met Meghan, you know, something.
Speaker 3 (09:13):
That might have been extremely negative to her came out
on my end to be extremely positive because now I
was able to I was able to take Megan with
me as my co founder on this journey of the
Tumbleweeds Foundation, and she's been I'm watching her grow tremendously
and just watching her with people and engagement and just
(09:36):
you know, finding a purpose. You know, we walk out
of places, you know, with a weight and then you know,
with a weight on our shoulders sometimes, but then when
we leave, we realized the impact we've made on them,
on a certain individual, whatever it may be. So she's
been a massive inspiration in my life.
Speaker 2 (09:57):
Tell us about the event coming up.
Speaker 3 (10:00):
So we did it last year for the first time
we do we host our Tumbleweeds Foundation ribeating contests, So
we did it last year for our first time.
Speaker 4 (10:09):
We did in the restaurant. My restaurant's not that big.
Speaker 3 (10:11):
It holds about forty people, so we didn't know what
was going to happen. So we ended up putting out there.
We offered free beer, we offered people were signing up
to do the competition, and we were packed. The restaurant
was overloaded. We people could barely fit inside.
Speaker 4 (10:28):
So we upgraded.
Speaker 3 (10:30):
So on November ninth, we made arrangements with the American
Legion because we do this event in honor of Veterans Day,
which would be on that Monday, and respect and honor
to our vets as a way of showing our acknowledging
them and showing our respect. So on November ninth, we're
hosting our second annual ribeating competition, and right now our
(10:51):
only fear is that if we outgrow this location. You know,
hopefully that that's a really good turning point for us,
because you know that that our our mission is starting
to catch on and people want to be surrounded by
by good things and good people.
Speaker 2 (11:06):
How do people enter? How to do that? They have
to sign up first, right, Yeah, we.
Speaker 3 (11:11):
Had them signing up prior. So we have we have
links on our website. We have through our codes they
can email me and it's the whoever can eat the
full rack of Saint Louis Ribs in the fastest time.
Speaker 2 (11:23):
Okay, And so they go to Tumbleweed's foundation dot org.
Speaker 4 (11:28):
Yeah, they could do it. They can go on there.
Speaker 3 (11:29):
We have our links on our Instagram handle as well
that chows to sign up. This year we grew also
where we're including three live bands to come and play
at the show. We have some raffle baskets, we have
mini games for kids, and we're doing a little scavenger
hunt with American flags.
Speaker 2 (11:47):
Oh that's wonderful. So Megan, what does this all mean
to you that John is and I know you're organizing
this as well. But I mean, if it wasn't for you,
he wouldn't have done any of this. This wouldn't have
happened in his life. He could have chosen some other
organization to help. But I mean you really touched his life.
(12:10):
Do you changed his life?
Speaker 5 (12:13):
Well, tumble Weeds came to me, I like to say
that a perfect time, and I think it's also changed
my life.
Speaker 6 (12:21):
And having John, you know how doing that start this,
It's it's been such a blessing and it's been such
a great experience and I just I hope I can
get to do this with John for the rest of
my life.
Speaker 2 (12:37):
Well, it sounds like it's going to get bigger and
bigger every single year. Megan, you mentioned you had surgeries.
How many surgeries have you had to endure?
Speaker 5 (12:46):
Roughly, I'm gonna say around twenty five.
Speaker 2 (12:49):
Probably, Oh my goodness. Starting when how old were you
with the first surgery?
Speaker 5 (12:54):
Since I was born?
Speaker 6 (12:55):
Yeah?
Speaker 5 (12:55):
Probably? Yeah?
Speaker 2 (12:59):
So, I mean that is that's just so incredibly rough too,
I mean physically on you and I mean just the
whole hospitalization and all that. How have you dealt with
this over the years.
Speaker 6 (13:19):
I think each time is different. I think the most
important thing to me is having good people who you know,
showing their support for me surrounded me and you know,
my friends and my family and just all their words
(13:40):
of support and kindness and just them showing their luck.
Speaker 5 (13:44):
It's just it makes each time easier and easier.
Speaker 2 (13:48):
Okay, John, we only have about a minute and a
half left. What have we not talked about that you
want to let our listeners know about?
Speaker 3 (13:56):
Well, I just want them to know about the growth
we're hoping to have over the course of the next
year or two. You know, we're fairly new. We just
started in May, and our goal is to almost I
want you to like we have. We have entanglers. We
have a group called entanglers. It's we consider entanglers our donors,
and anyone who becomes a part of mission like you
(14:17):
would be considered an entangler. Now that you're here with us,
you know, sharing us our information, getting at whether it
be supporting like this, you know, I want you to
almost like picture like a small tree that we are
now with little branches called entanglers. We want those, We
want these, We want entanglers to join us as and
be a part of this sturdy tree.
Speaker 4 (14:35):
Because a tumbleweed.
Speaker 3 (14:36):
You know, they they're loose and they need something to
ground them. And the more entangledged we have, the more
dense with love and compassion is true will become and
we'll be able to hopefully help as many people as
you can be possible. And we're just one little tree now,
but imagine this dense tree of love and compassion in
every single state where we could all join together and
(14:58):
almost form like an army of good deeds, where it's
just good things being around for especially younger generations, to
see it being actively done and not not take something
that might have been you know, yet it was what
what what was extremely drastic for for megan to become
a massive solution to many problems, and that you know
(15:20):
that that initial impact of when something happened to someone,
you know a lot of people there you could see,
you know that there's always you know, someone passes away,
that the family's there, but then that four or five
months later, there that that initial love it's not there.
That's where we want to kind of like step in
because it might take a little bit more time for
(15:41):
someone to you know, bounce back from something that was
really negative in their life and always be there for them.
Speaker 4 (15:47):
You know, even if it was yesterday.
Speaker 3 (15:48):
Three years ago, four years ago, that little positive push
could make a major difference. And we just imagine that
ripple effect across the USA.
Speaker 2 (15:58):
And this just shows how one person can really make
a difference. And I love that. I mean, really your
own individual kindness and generosity. I'm speaking to you in
the audience. It really does make a difference. Tumbleweedsfoundation dot
org for more information. Thank you so much, John Cavallo
(16:19):
and Megan Kinney.
Speaker 1 (16:21):
You've been listening to Sunstein Sessions on iHeartRadio, a production
of New York's classic rock Q one O four point
three