0:00:18.023,0:00:20.217
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,[br]before my freshman year in High School,

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

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and it was a dream[br]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,[br]I weigh only about 50 pounds.

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

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and because of this the band director[br]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[br]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,[br]and I was just so devastated.

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However, nothing was going [br]to stop me

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from playing snare drum[br]with the marching band

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in the halftime show.

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So my family and I worked[br]with an engineer to design

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a snare drum harness

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

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So after continuous work, we made

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a snare drum apparatus[br]that weighs only about 6 pounds.

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(Applause)

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

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It affects only about[br]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,[br]stunted growth,

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and heart disease.

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Last year my Mom [br]and her team of scientists

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published the first successful[br]Progeria Treatment Study,

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and because of this[br]I was interviewed on NPR,

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and John Hamilton asked me[br]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[br]there are many obstacles in my life,

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with a lot of them[br]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[br]these obstacles all the time,

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

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

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

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So this is a quote[br]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 [br]ask me questions like,

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

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"What daily challenges[br]of Progeria do you face?"

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

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most of my time[br]is spent thinking about things

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that have nothing to do[br]with Progeria at all.

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Now this doesn’t mean that I ignore[br]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,[br]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,[br]I choose to focus on the activities

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that I can do through things[br]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 --[br](Laughter)

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

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by making adjustments,

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

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Kind of like you saw[br]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 [br]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[br]to accomplish my dream

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of playing snare drum[br]with the marching band,

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as I believe I can do[br]for all of my dreams.

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So hopefully, you can accomplish[br]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[br]with people I want to be with,

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people of high quality.

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I’m extremely lucky[br]to have an amazing family,

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who have always supported me[br]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 [br]at school.

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

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but we really enjoy [br]each other’s company,

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and we help each other out [br]when we need to.

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We see each other[br]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[br]younger band members,

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as a single collective unit.

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

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is that the music[br]that we make together,

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is true, is genuine,[br]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[br]about making music.

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But even having made [br]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[br]that surround me every day.

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They provide the real[br]positive influences in my life,

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as I hope I can provide[br]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[br]and love your family,

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love your friends,[br]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[br]aspect of everyday life,

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they can make a truly significant,[br]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[br]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[br]to look forward to.

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Something to strive for[br]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[br]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[br]High School football game.

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However, all of these things[br]keep me focused,

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and know that there’s[br]a bright future ahead,

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

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

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

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because when I do,[br]I get stuck in a paradox,

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

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

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I kind of accept it,

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I let it in, [br]so that I can acknowledge it,

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and do what I need to do [br]to move past it.

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When I was younger,[br]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[br]into a better future.

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Maybe this came [br]from my love of Legos,

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and the freedom of expression [br]that I felt

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when I was building with them.

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And this was also derived[br]from my family and my mentors,

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

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Now today my ambitions[br]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,[br]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,[br]chatting away.

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I feel that no matter what[br]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,[br]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[br]called “Life According to Sam”.

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

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And like anyone, my views[br]on many things have changed,

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and hopefully matured,[br]like my potential career choice.

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

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Like my mentality,[br]and philosophy towards life.

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So I would like to show you

0:10:04.730,0:10:07.921
a clip of my younger self from the film,

0:10:07.921,0:10:11.492
that I feel embodies that philosophy.

0:10:11.492,0:10:12.659
(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[br]from doing all this stuff,

0:10:24.135,0:10:26.669
that causes other kids to die,

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that causes everybody [br]to be stressed,

0:10:29.639,0:10:35.276
and now[br]it’s a protein that is abnormal,

0:10:35.276,0:10:39.072
that weakens the structure of cells.

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So,

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and it takes a burden[br]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?

0:10:57.507,0:11:01.596
(Applause)

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Thank you.

0:11:02.671,0:11:05.990
So, as you can see I’ve been[br]thinking this way for many years.

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

0:11:10.435,0:11:14.176
to the test at one time, [br]until last January.

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

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

0:11:23.600,0:11:25.124
made me, me,

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that kind of gave me my identity.

0:11:27.952,0:11:31.029
But knowing[br]that I was going to get better,

0:11:31.029,0:11:34.009
and looking forward to a time[br]that I would feel good again,

0:11:34.009,0:11:36.659
helped me to keep moving forward.

0:11:36.659,0:11:39.211
And sometimes I had to be brave,

0:11:39.211,0:11:41.003
and it wasn’t always easy.

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Sometimes I faltered,

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I had bad days,

0:11:44.363,0:11:47.857
but I realized that being brave[br]isn’t supposed to be easy.

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

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So, all in all,

0:11:54.181,0:11:57.725
I don’t waste energy[br]feeling bad for myself.

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I surround myself with people[br]that I want to be with,

0:12:01.040,0:12:03.317
and I keep moving forward.

0:12:03.317,0:12:06.689
So with this philosophy,[br]I hope that all of you,

0:12:06.689,0:12:08.766
regardless of your obstacles,

0:12:08.766,0:12:11.613
can have a very happy life as well.

0:12:11.613,0:12:13.131
Oh, wait, hang on a second,

0:12:13.131,0:12:15.619
one more piece of advice –-

0:12:15.619,0:12:17.219
(Laughter)

0:12:17.219,0:12:19.709
Never miss a party if you can help it.

0:12:19.709,0:12:22.085
My school’s homecoming dance[br]is tomorrow night,

0:12:22.085,0:12:24.169
and I will be there.

0:12:24.169,0:12:25.641
Thank you very much.

0:12:25.641,0:12:31.295
(Applause)