WEBVTT

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Hello everyone.

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I'm Sam,

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and I just turned 17.

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A few years ago,
before my freshman year in High School,

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I wanted to play snare drum
in the Foxboro High School Marching Band,

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and it was a dream
that I just had to accomplish.

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But each snare drum and harness

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weighed about 40 pounds each,

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and I have a disease called Progeria.

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So just to give you an idea,
I weigh only about 50 pounds.

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So, logistically, I really couldn't carry
a regular sized snare drum,

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and because of this the band director
assigned me to play

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pit percussion during the halftime show.

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Now pit percussion was fun.

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It involved some really cool
auxiliary percussion instruments,

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like the bongos, timpani,

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and timbales, and cowbell.

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So it was fun,

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but it involved no marching,
and I was just so devastated.

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However, nothing was going 
to stop me

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from playing snare drum
with the marching band

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in the halftime show.

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So my family and I worked
with an engineer to design

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a snare drum harness

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that would be lighter,
and easier for me to carry.

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So after continuous work, we made

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a snare drum apparatus
that weighs only about 6 pounds.

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(Applause)

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I just want to give you some more
information about Progeria.

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It affects only about
350 kids today, worldwide.

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So it's pretty rare,

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and the effects of Progeria include:

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tight skin, lack of weight gain,
stunted growth,

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and heart disease.

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Last year my Mom 
and her team of scientists

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published the first successful
Progeria Treatment Study,

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and because of this
I was interviewed on NPR,

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and John Hamilton asked me
the question:

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"What is the most important thing

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that people should know about you?"

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And my answer was simply that

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I have a very happy life.

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(Applause)

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So even though
there are many obstacles in my life,

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with a lot of them
being created by Progeria,

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I don't want people to feel bad for me.

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I don't think about
these obstacles all the time,

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and I'm able to overcome
most of them anyway.

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So I’m here today, to share with you
my philosophy for a happy life.

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So, for me,
there are 3 aspects to this philosophy.

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So this is a quote
from the famous Ferris Bueller.

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The first aspect to my philosophy is that

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I’m okay with what I ultimately can’t do

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because there is so much I can do.

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Now people sometimes 
ask me questions like,

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"Isn’t it hard living with Progeria?", or

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"What daily challenges
of Progeria do you face?"

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And I’d like to say that,
even though I have Progeria,

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most of my time
is spent thinking about things

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that have nothing to do
with Progeria at all.

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Now this doesn’t mean that I ignore
the negative aspects of these obstacles.

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When I can’t do something like

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run a long distance,
or go on an intense roller coaster,

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I know what I’m missing out on.

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But instead,
I choose to focus on the activities

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that I can do through things
that I’m passionate about,

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like scouting, or music, or comic books,

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or any of my favorite Boston sports teams.

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Yeah, so --
(Laughter)

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However, sometimes I need to find
a different way to do something

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by making adjustments,

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and I want to put those things
in the "can do" category.

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Kind of like you saw
with the drum earlier.

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So here’s a clip

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with me playing Spider-Man

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with the Foxboro High School 
Marching Band

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at halftime a couple of years ago.

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(Video)

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♫ Spider-Man theme song ♫

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(Applause)

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Thank you.

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All right, all right, so --

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That was pretty cool,

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and so I was able
to accomplish my dream

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of playing snare drum
with the marching band,

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as I believe I can do
for all of my dreams.

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So hopefully, you can accomplish
your dreams as well, with this outlook.

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The next aspect to my philosophy is

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that I surround myself
with people I want to be with,

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people of high quality.

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I’m extremely lucky
to have an amazing family,

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who have always supported me
throughout my entire life.

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And I’m also really fortunate to have

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a really close group of friends 
at school.

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Now we’re kind of goofy,
a lot of us are band geeks,

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but we really enjoy 
each other’s company,

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and we help each other out 
when we need to.

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We see each other
for who we are on the inside.

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So this is us goofing off a little bit.

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So we’re juniors in High School now,

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and we can now mentor
younger band members,

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as a single collective unit.

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What I love about
being in a group like the band,

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is that the music
that we make together,

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is true, is genuine,
and it supersedes Progeria.

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So I don’t have to worry about that

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when I’m feeling so good
about making music.

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But even having made 
a documentary,

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going on TV a couple of times,

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I feel like I’m at my highest point

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when I’m with the people
that surround me every day.

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They provide the real
positive influences in my life,

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as I hope I can provide
a positive influence in theirs as well.

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(Applause)

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Thank you.

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So the bottom line here,

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is that I hope you appreciate
and love your family,

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love your friends,
for you guys, love you Bro’s

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and acknowledge your mentors,

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and your community,

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because they are a very real
aspect of everyday life,

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they can make a truly significant,
positive impact.

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The third aspect to the philosophy is,

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Keep moving forward.

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Here’s a quote by a man
you may know, named Walt Disney,

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and it’s one of my favorite quotes.

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I always try to have something
to look forward to.

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Something to strive for
to make my life richer.

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It doesn’t have to be big.

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It could be anything from

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looking forward to
the next comic book to come out,

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or going on a large family vacation,

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or hanging out with my friends,

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to going to the next
High School football game.

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However, all of these things
keep me focused,

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and know that there’s
a bright future ahead,

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and may get me through
some difficult times that I may be having.

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Now this mentality includes staying
in a forward thinking state of mind.

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I try hard not to waste energy
feeling badly for myself,

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because when I do,
I get stuck in a paradox,

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where there’s no room for 
any happiness or any other emotion.

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Now, it’s not that I ignore
when I’m feeling badly,

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I kind of accept it,

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I let it in, 
so that I can acknowledge it,

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and do what I need to do 
to move past it.

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When I was younger,
I wanted to be an engineer.

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I wanted to be an inventor,

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who would catapult the world
into a better future.

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Maybe this came 
from my love of Legos,

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and the freedom of expression 
that I felt

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when I was building with them.

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And this was also derived
from my family and my mentors,

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who always make me feel whole,
and good about myself.

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Now today my ambitions
have changed a little bit,

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I’d like to go into the field of Biology,

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maybe cell biology, or genetics,

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or biochemistry, or really anything.

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This is a friend of mine,
who I look up to,

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Francis Collins, the director of the NIH,

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and this is us at TEDMED last year,
chatting away.

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I feel that no matter what
I choose to become,

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I believe that I can change the world.

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And as I’m striving to change the world,
I will be happy.

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About four years ago,

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HBO began to film a documentary

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about my family and me
called “Life According to Sam”.

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That was a pretty great experience,
but it was also four years ago.

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And like anyone, my views
on many things have changed,

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and hopefully matured,
like my potential career choice.

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However, some things have stayed 
the same throughout that time.

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Like my mentality,
and philosophy towards life.

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So I would like to show you

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a clip of my younger self from the film,

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that I feel embodies that philosophy.

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(Video)

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I know more about it genetically.

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So it’s less of an embodiment now.

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It used to be like

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this thing that prevents me
from doing all this stuff,

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that causes other kids to die,

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that causes everybody 
to be stressed,

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and now
it’s a protein that is abnormal,

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that weakens the structure of cells.

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So,

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and it takes a burden
off of me because now

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I don’t have to think about

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Progeria as an entity.

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Okay, pretty good, huh?

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(Applause)

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Thank you.

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So, as you can see I’ve been
thinking this way for many years.

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But I’d never really had to apply
all of these aspects of my philosophy

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to the test at one time, 
until last January.

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I was pretty sick, I had a chest cold,
and I was in the hospital for a few days,

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and I was secluded from 
all of the aspects of my life that I felt

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made me, me,

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that kind of gave me my identity.

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But knowing
that I was going to get better,

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and looking forward to a time
that I would feel good again,

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helped me to keep moving forward.

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And sometimes I had to be brave,

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and it wasn’t always easy.

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Sometimes I faltered,

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I had bad days,

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but I realized that being brave
isn’t supposed to be easy.

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And for me, I feel it’s the key way
to keep moving forward.

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So, all in all,

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I don’t waste energy
feeling bad for myself.

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I surround myself with people
that I want to be with,

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and I keep moving forward.

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So with this philosophy,
I hope that all of you,

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regardless of your obstacles,

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can have a very happy life as well.

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Oh, wait, hang on a second,

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one more piece of advice –-

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(Laughter)

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Never miss a party if you can help it.

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My school’s homecoming dance
is tomorrow night,

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and I will be there.

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Thank you very much.

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(Applause)