Hello everyone. I'm Sam, and I just turned 17. A few years ago, before my freshman year in High School, I wanted to play snare drum in the Foxboro High School Marching Band, and it was a dream that I just had to accomplish. But each snare drum and harness weighed about 40 pounds each, and I have a disease called Progeria. So just to give you an idea, I weigh only about 50 pounds. So, logistically, I really couldn't carry a regular sized snare drum, and because of this the band director assigned me to play pit percussion during the halftime show. Now pit percussion was fun. It involved some really cool auxiliary percussion instruments, like the bongos, timpani, and timbales, and cowbell. So it was fun, but it involved no marching, and I was just so devastated. However, nothing was going to stop me from playing snare drum with the marching band in the halftime show. So my family and I worked with an engineer to design a snare drum harness that would be lighter, and easier for me to carry. So after continuous work, we made a snare drum apparatus that weighs only about 6 pounds. (Applause) I just want to give you some more information about Progeria. It affects only about 350 kids today, worldwide. So it's pretty rare, and the effects of Progeria include: tight skin, lack of weight gain, stunted growth, and heart disease. Last year my Mom and her team of scientists published the first successful Progeria Treatment Study, and because of this I was interviewed on NPR, and John Hamilton asked me the question: "What is the most important thing that people should know about you?" And my answer was simply that I have a very happy life. (Applause) So even though there are many obstacles in my life, with a lot of them being created by Progeria, I don't want people to feel bad for me. I don't think about these obstacles all the time, and I'm able to overcome most of them anyway. So I’m here today, to share with you my philosophy for a happy life. So, for me, there are 3 aspects to this philosophy. So this is a quote from the famous Ferris Bueller. The first aspect to my philosophy is that I’m okay with what I ultimately can’t do because there is so much I can do. Now people sometimes ask me questions like, "Isn’t it hard living with Progeria?" or "What daily challenges of Progeria do you face?" And I’d like to say that, even though I have Progeria, most of my time is spent thinking about things that have nothing to do with Progeria at all. Now this doesn’t mean that I ignore the negative aspects of these obstacles. When I can’t do something like run a long distance, or go on an intense roller coaster, I know what I’m missing out on. But instead, I choose to focus on the activities that I can do through things that I’m passionate about, like scouting, or music, or comic books, or any of my favorite Boston sports teams. Yeah, so -- (Laughter) However, sometimes I need to find a different way to do something by making adjustments, and I want to put those things in the "can do" category. Kind of like you saw with the drum earlier. So here’s a clip with me playing Spider-Man with the Foxboro High School Marching Band at halftime a couple of years ago. (Video) ♫ Spider-Man theme song ♫ (Applause) Thank you. All right, all right, so -- That was pretty cool, and so I was able to accomplish my dream of playing snare drum with the marching band, as I believe I can do for all of my dreams. So hopefully, you can accomplish your dreams as well, with this outlook. The next aspect to my philosophy is that I surround myself with people I want to be with, people of high quality. I’m extremely lucky to have an amazing family, who have always supported me throughout my entire life. And I’m also really fortunate to have a really close group of friends at school. Now we’re kind of goofy, a lot of us are band geeks, but we really enjoy each other’s company, and we help each other out when we need to. We see each other for who we are on the inside. So this is us goofing off a little bit. So we’re juniors in High School now, and we can now mentor younger band members, as a single collective unit. What I love about being in a group like the band, is that the music that we make together, is true, is genuine, and it supersedes Progeria. So I don’t have to worry about that when I’m feeling so good about making music. But even having made a documentary, going on TV a couple of times, I feel like I’m at my highest point when I’m with the people that surround me every day. They provide the real positive influences in my life, as I hope I can provide a positive influence in theirs as well. (Applause) Thank you. So the bottom line here, is that I hope you appreciate and love your family, love your friends, for you guys, love you Bro’s and acknowledge your mentors, and your community, because they are a very real aspect of everyday life, they can make a truly significant, positive impact. The third aspect to the philosophy is, Keep moving forward. Here’s a quote by a man you may know, named Walt Disney, and it’s one of my favorite quotes. I always try to have something to look forward to. Something to strive for to make my life richer. It doesn’t have to be big. It could be anything from looking forward to the next comic book to come out, or going on a large family vacation, or hanging out with my friends, to going to the next High School football game. However, all of these things keep me focused, and know that there’s a bright future ahead, and may get me through some difficult times that I may be having. Now this mentality includes staying in a forward thinking state of mind. I try hard not to waste energy feeling badly for myself, because when I do, I get stuck in a paradox, where there’s no room for any happiness or any other emotion. Now, it’s not that I ignore when I’m feeling badly, I kind of accept it, I let it in, so that I can acknowledge it, and do what I need to do to move past it. When I was younger, I wanted to be an engineer. I wanted to be an inventor, who would catapult the world into a better future. Maybe this came from my love of Legos, and the freedom of expression that I felt when I was building with them. And this was also derived from my family and my mentors, who always make me feel whole, and good about myself. Now today my ambitions have changed a little bit, I’d like to go into the field of Biology, maybe cell biology, or genetics, or biochemistry, or really anything. This is a friend of mine, who I look up to, Francis Collins, the director of the NIH, and this is us at TEDMED last year, chatting away. I feel that no matter what I choose to become, I believe that I can change the world. And as I’m striving to change the world, I will be happy. About four years ago, HBO began to film a documentary about my family and me called “Life According to Sam”. That was a pretty great experience, but it was also four years ago. And like anyone, my views on many things have changed, and hopefully matured, like my potential career choice. However, some things have stayed the same throughout that time. Like my mentality, and philosophy towards life. So I would like to show you a clip of my younger self from the film, that I feel embodies that philosophy. (Video) I know more about it genetically. So it’s less of an embodiment now. It used to be like this thing that prevents me from doing all this stuff, that causes other kids to die, that causes everybody to be stressed, and now it’s a protein that is abnormal, that weakens the structure of cells. So, and it takes a burden off of me because now I don’t have to think about Progeria as an entity. Okay, pretty good, huh? (Applause) Thank you. So, as you can see I’ve been thinking this way for many years. But I’d never really had to apply all of these aspects of my philosophy to the test at one time, until last January. I was pretty sick, I had a chest cold, and I was in the hospital for a few days, and I was secluded from all of the aspects of my life that I felt made me, me, that kind of gave me my identity. But knowing that I was going to get better, and looking forward to a time that I would feel good again, helped me to keep moving forward. And sometimes I had to be brave, and it wasn’t always easy. Sometimes I faltered, I had bad days, but I realized that being brave isn’t supposed to be easy. And for me, I feel it’s the key way to keep moving forward. So, all in all, I don’t waste energy feeling bad for myself. I surround myself with people that I want to be with, and I keep moving forward. So with this philosophy, I hope that all of you, regardless of your obstacles, can have a very happy life as well. Oh, wait, hang on a second, one more piece of advice –- (Laughter) Never miss a party if you can help it. My school’s homecoming dance is tomorrow night, and I will be there. Thank you very much. (Applause)
Pozdravljeni vsi skupaj. Sem Sam in sem pravkar dopolnil 17 let. Pred nekaj leti, preden sem postal fazan v srednji šoli, sem želel igrati mali boben v godbi srednje šole Foxboro in to so bile sanje, ki sem jih enostavno moral uresničiti. A vsak mali boben s pripadajočim oprtnikom je bil težek približno 18 kg, jaz pa imam bolezen, ki se ji reče progerija. Samo, da veste, kaj to pomeni, težek sem le približno 23 kg. Torej čisto logistično nisem mogel nositi malega bobna običajne velikosti, zato mi je vodja godbe dal igrati ksilofon med polčasoma. Ksilofon je bil zabaven. Vključeval je nekaj resnično kul pomožnih tolkalnih inštrumentov, kot so bongi, pavke, timbale in kravji zvonec. Res je bilo zabavno, a ni vključevalo korakanja, zato sem bil resnično razočaran. A nič me ni moglo ustaviti pred igranjem malega bobna z godbo v predstavi med polčasoma. Z družino smo sodelovali z inženirjem, da bi oblikovali oprtnik za mali boben, ki bi bil lažji in bi ga lažje nosil. Po neprekinjenem delu smo naredili napravo za mali boben, ki je težka le okoli 2,7 kg. (aplavz) Rad bi vam podal še nekaj informacij o progeriji. Po celem svetu je trenutno le 350 otrok s to boleznijo. Torej je precej redka, njene posledice pa vključujejo: napeto kožo, nezmožnost pridobivanja telesne teže, zavrto rast in bolezen srca. Lani je moja mama s svojo ekipo znanstvenikov objavila prvo uspešno študijo o zdravljenju progerije in zato so me intervjuvali na nacionalnem javnem radiu (NPR), kjer me je John Hamilton vprašal: "Kaj je najpomembnejša stvar, ki bi jo ljudje morali vedeti o tebi?" In moj odgovor je bil preprosto to, da imam zelo srečno življenje. (aplavz) Torej, čeprav je v mojem življenju mnogo ovir in mnogo jih je ustvarila progerija, se nočem ljudem smiliti. O teh ovirah ne razmišljam neprestano in večino jih tako ali tako zmorem premagati. Danes sem tukaj zato, da z vami delim svojo filozofijo za srečno življenje. Zame obstajajo trije vidiki te filozofije. To je citat slavnega Ferrisa Buellerja. Prvi vidik moje filozofije je, da sem sprijaznjen s tem, česar ne morem početi, ker je toliko stvari, ki jih lahko počnem. Ljudje me včasih sprašujejo: "A ni težko živeti s progerijo?", ali: "S katerimi vsakodnevnimi izzivi progerije se soočaš?" In rad jim odgovorim, da čeprav imam progerijo, večino časa porabim za razmišljanje o stvareh, ki sploh nimajo nobene zveze s progerijo. No, to ne pomeni, da negativne vidike ovir kar ignoriram. Ko nečesa ne morem narediti, npr. preteči dolge razdalje ali iti na napet vlak smrti, vem, kaj zamujam. Vendar se namesto tega osredotočim na aktivnosti, ki jih lahko počnem skozi stvari, nad katerimi sem navdušen, kot je taborništvo, glasba ali stripi ali katero od mojih najljubših bostonskih športnih ekip. Ja, torej - (smeh) Vendar pa moram včasih najti drugačen način, da kaj naredim, tako da naredim prilagoditve in te stvari želim dati v kategorijo "zmorem". Podobno kot ste prej videli z bobnom. Tukaj je posnetek mene, kako igram Spider-Mana (Človeka-pajka) z godbo srednje šole Foxboro med polčasoma pred nekaj leti. (video) ♫ melodija iz filma Spider-Man ♫ (aplavz) Hvala. V redu, v redu, torej - To je bilo zelo kul in lahko sem uresničil svoje sanje o igranju malega bobna z godbo, in verjamem, da lahko enako naredim z vsemi svojimi sanjami. Upam, da lahko s takšnim pogledom na svet tudi vi uresničite svoje sanje. Naslednji vidik moje filozofije je, da se obdam z ljudmi, katerih družbe si želim, ljudmi visoke kakovosti. Izjemno srečo imam, da imam neverjetno družino, ki me je vedno podpirala skozi vse življenje. Prav tako imam srečo, da imam v šoli skupino res tesnih prijateljev. Malo smo prismuknjeni in dosti nas je čudakov iz benda, a zares uživamo v družbi drug drugega in si pomagamo, ko je potrebno. Vidimo se takšne, kot smo od znotraj. Tu se vedemo rahlo prismuknjeno. Zdaj smo v tretjem letniku srednje šole in lahko smo mentorji mlajšim članom benda kot ena kolektivna enota. Pri tem, da sem član skupine, kot je bend, mi je najljubše to, da je glasba, ki jo skupaj ustvarjamo, resnična, pristna in presega progerijo. Tako me ni treba skrbeti o tem, ko se tako dobro počutim ob ustvarjanju glasbe. Čeprav sem posnel dokumentarec, bil nekajkrat na televiziji, se najbolje počutim, ko sem z ljudmi, ki me obkrožajo vsak dan. Na moje življenje vplivajo resnično pozitivno in upam, da tudi jaz vplivam pozitivno na njihova. (aplavz) Hvala. Pod črto: upam, da cenite in imate radi svojo družino, imate radi svoje prijatelje, za vas fante, da imate radi "brate", in izkazujete priznanje svojim mentorjem in svoji skupnosti, ker so zelo resničen vidik vsakodnevnega življenja, lahko imajo resnično velik, pozitiven vpliv. Tretji vidik filozofije je, nadaljuj s premikanjem naprej. Tukaj je citat moškega, ki ga morda poznate, z imenom Walt Disney, in je en od mojih najljubših citatov. Vedno poskušam imeti nekaj, česar se veselim. Nekaj, za kar si prizadevam, da bi obogatil svoje življenje. Ni treba, da je nekaj velikega. Lahko je karkoli, od tega, da se veselim novega izvoda stripa ali odhoda na velik družinski dopust ali druženja s prijatelji, do obiska naslednje srednješolske nogometne tekme. Kakorkoli, vse te stvari me držijo osredotočenega in vem, da je pred mano svetla prihodnost in to mi lahko pomaga priti skozi morebitna težka obdobja. Ta mentaliteta vključuje ostajanje v stanju uma, ki gleda naprej. Zelo se trudim, da ne zapravljam energije s smiljenjem samemu sebi, ker ko to delam, se zataknem v paradoksu, v katerem ni prostora za srečo ali katero drugo čustvo. To ne pomeni, da ignoriram trenutke, ko se slabo počutim, na nek način jih sprejmem, spustim jih noter, da jih lahko prepoznam in da lahko naredim, kar moram, da se premaknem naprej. Ko sem bil mlajši, sem želel postati inženir. Želel sem postati izumitelj, ki bi svet katapultiral v boljšo prihodnost. Mogoče je to prišlo iz moje ljubezni do Lego kock in svobode izražanja, ki sem jo občutil, ko sem z njimi gradil. To je prišlo tudi od moje družine in mojih mentorjev, zaradi katerih se vedno počutim kot celota in imam dober občutek o sebi. Danes so se moje ambicije rahlo spremenile, rad bi delal na področju biologije, mogoče celične biologije ali genetike ali biokemije ali česarkoli. To je moj prijatelj, ki mi je vzor, Francis Collins, direktor NIH (Nacionalnih inštitutov za zdravje), in tukaj klepetava na lanskem TEDMED. Občutek imam, da ne glede na to, kar si bom izbral, da postanem, verjamem, da bom lahko spremenil svet. In ob prizadevanju spremeniti svet bom srečen. Pred približno štirimi leti je HBO pričel snemati dokumentarec o moji družini in meni z naslovom "Življenje po Samu". To je bila odlična izkušnja, a je bila že pred štirimi leti. Kot pri vsakem, so se tudi moji pogledi na mnoge stvari spremenili in upam, da dozoreli, kot izbira moje potencialne kariere. Vendar pa so nekatere stvari ves čas ostale enake. Kot moja mentaliteta in filozofija o življenju. Rad bi vam pokazal odlomek iz filma z mlajšim mano, za katerega se mi zdi, da uteleša to filozofijo. (video) Več vem o njej z vidika genetike. Tako da je zdaj to manjše utelešenje. Bila je kot ta stvar, ki mi preprečuje, da bi počel stvari, ki povzroča, da drugi otroci umirajo, ki vsem povzroča stres, zdaj pa je nenormalna beljakovina, ki šibi strukturo celic. Torej, to me razbremenjuje, ker mi zdaj ni več treba misliti o progeriji kot o entiteti. Prav, kar v redu, kaj? (aplavz) Hvala. Kot vidite, tako razmišljam že mnogo let. Nikoli pa mi ni bilo treba dati vseh teh vidikov moje filozofije na preizkus naenkrat, vse do preteklega januarja. Bil sem precej bolan, imel sem bronhitis in nekaj dni sem bil v bolnišnici in bil sem ločen od vseh vidikov svojega življenja, za katere sem čutil, da so me delali takšnega, kot sem, ki so mi na nek način dajali mojo identiteto. A vedenje, da bom ozdravel in to, da sem se veselil časa, ko se bom spet dobro počutil, mi je pomagalo, da sem šel naprej. In včasih sem moral biti hraber in ni bilo vedno lahko. Včasih sem obstal, imel sem slabe dneve, a spoznal sem, da biti hraber nikoli ni lahko. Zame je to ključni način za premikanje naprej. Skupaj vzeto ne zapravljam energije, da bi se smilil samemu sebi. Obkrožam se z ljudmi, v družbi katerih si želim biti, in grem naprej. Upam, da boste s to filozofijo, ne glede na vaše ovire, tudi vi lahko imeli zelo srečno življenje. Oh, samo še trenutek, še en nasvet - (smeh) Če se le da, nikoli ne zamudite zabave. Jutri zvečer je na moji šoli ples in jaz bom tam. Najlepša vam hvala. (aplavz)