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)
Pozdrav svima. Ja sam Sam, i upravo sam napunio 17. Prije nekoliko godina, prije moje prve godine u srednjoj školi, htio sam svirati veliki bubanj u školskom puhačkom orkestru srednje škole Foxboro, i to je bio san koji sam jednostavno morao ostvariti. Ali svaki bubanj i remenje težili su oko 20 kilograma, i ja imam bolest koja se zove progerija. Samo da dobijete sliku, težak sam samo 25 kilograma. Dakle, logično, zaista nisam mogao nositi bubanj standardne veličine, i zbog ovoga je upravitelj benda odredio da sviram pomoćne udaraljke za vrijeme poluvremena. Svirati pomoćne udaraljke bilo je zabavno. Uključivalo je neke zaista zabavne udaraljke, kao što su bongosi, timpani, i timbalesi i zvono. I bilo je vrlo zabavno, ali nije uključivalo marširanje i bio sam očajan. No ipak, ništa me nije moglo zaustaviti da sviram veliki bubanj u puhačkom orkestru za vrijeme poluvremena. Tako da smo moja obitelj i ja radili s inžinjerom na dizajnu remenja za bubanj koje bi bilo lakše, i jednostavnije za nositi. Nakon neprestanog rada napravili smo nosač za bubanj koji je težio oko 3 kilograma. (Pljesak) Želim vam dati malo informacija o progeriji. Ona utječe na samo 350 djece, danas. Tako da je poprilično rijetka, i posljedice progerije uključuju: zategnutu kožu, nemogućnost dobivanja težine, usporen rast, i srčane bolesti. Prošle godine su moja majka i njen tim znanstvenika objavili prvu uspješnu studiju za tretiranje progerije, i zbog ovoga su me intervjuirali na NPR-u i John Hamilton me pitao pitanje: "Što je najvažnija stvar koju ljudi moraju znati o tebi?" I moj je odgovor jednostavno bio taj da imam jako sretan život. (Pljesak) Tako da, iako postoje mnoge prepreke u mom životu, a mnoge su stvorene od strane progerije, ne želim da me ljudi žale. Ne mislim o ovim preprekama cijelo vrijeme, i većinu ih mogu prevladati. Ovdje sam danas kako bih s vama podijelio moju filozofiju za sretan život. Za mene postoje tri aspekta ove filozofije. Ovaj citat je od slavnog Ferrisa Buellera. Prvi aspekt moje filozofije je taj da sam ok s onim što ne mogu učiniti jer postoji tako puno toga što mogu. Sad, ljudi me ponekad pitaju pitanja kao, "Nije li teško živjeti s progerijom?" ili "S kojim dnevnim izazovima se suočavaš zbog progerije?" I volim reći da iako imam Progeriju, većinu vremena provodim razmišljajući o stvarima koje nemaju nikakve veze sa progerijom. Ovo ne znači da ignoriram negativne strane ovih prepreka. Kada ne mogu napraviti nešto kao što je trčati na veliku udaljenost, ili ići na intenzivni tobogan smrti, znam što propuštam. Ali umjesto toga, usredotočim se na aktivnosti, koje mogu činiti kroz stvari oko kojih sam strastven, kao izviđaštvo, glazba ili stripovi ili moj najdraži sportski tim u Bostonu. Da, dakle -- (Smijeh) No ponekad moram naći drugačiji način da nešto učinim radeći prilagodbe, i želim staviti te stvari u kategoriju onih stvari koje mogu učiniti. Kao što ste vidjeli s bubnjem ranije. Ovdje je isječak mene kako sviram Spider-Mana sa puhačkim orkestrom srednje škole Foxboro na poluvremenu prije nekoliko godina. (Video) ♫ Spider-Naslovna pjesma ♫ (Pljesak) Hvala vam. U redu, u redu, dakle -- To je bilo prilično super, i tako sam bio u mogućnosti ostvariti svoj san sviranja bubnja sa puhačkim orkestrom kao što vjerujem da mogu učiniti sa svim svojim snovima. Tako da se nadam da i vi možete ostvariti svoje snove ovim pogledom na život. Sljedeći aspekt moje filozofije je da se okružujem ljudima s kojima želim biti, kvalitetnim ljudima. Iznimno sam sretan što imam divnu obitelj, koja me uvijek podupirala kroz cijeli moj život. I također sam zaista sretan što sam imao blisku grupu prijatelja u školi. Pomalo smo smotani, i puno nas je štrebera iz benda, ali zaista uživamo u zajedničkom društvu, i pomažemo jedni drugima kad trebamo. Vidimo se onakvima kakvi smo iznutra. Ovo smo mi dok se malo glupiramo. Sada smo u drugom razredu srednje škole i možemo biti mentori mlađim članovima orkestra, kao jedna kolektivna jedinica. Ono što volim vezano uz pripadnost grupi kao što je orkestar je to da glazba koju radimo zajedno, je iskrena, stvarna i izdiže se iznad progerije. Tako da se ne moram brinuti oko toga kad se osjećam tako dobro dok stvaram glazbu. Ali čak i kad sam napravio dokumentarac, i bio par puta na televiziji, smatram da sam na vlastitoj najvišoj točci kada sam s ljudima koji me okružuju svakoga dana. Oni pružaju pravi pozitivan utjecaj u mom životu, kao što se nadam da ja mogu pozitivno utjecati na njihove. (Pljesak) Hvala vam. Zaključak ovdje je taj da se nadam da cijenite i volite vašu obitelj, volite svoje prijatelje, za momke, volite svoju "braću" i prihvatite svoje mentore, i vašu zajednicu, jer oni su vrlo stvaran aspekt svakodnevnog života, koji može napraviti zaista pozitivan utjecaj. Treći aspekt filozofije je, nastavite se kretati naprijed. Ovdje je citat čovjeka kojeg možda znate, imena Walt Disney, i ovo je jedan od mojih najdražih citata,. Uvijek se trudim imati nešto čemu ću se veseliti. Nešto čemu ću težiti kako bi mi život bio bogatiji. To ne mora biti veliko. Može biti bilo što od veselja sljedećem stripu koji će izaći, ili odlazak na veliki obiteljski odmor ili druženje s mojim prijateljima, pa do odlaska na sljedeću srednjoškolsku utakmicu američkog nogometa. Sve ove stvari drže me usredotočenima, i znam da postoji svijetla budućnost ispred, i to mi može pomoći da prevladam neka teška vremena koja mi se događaju. Sad ovaj mentalitet uključuje ostanak u stanju uma koji misli naprijed. Jako se trudim ne gubiti energiju žaleći samog sebe, jer kad to činim zaglavim se u paradoksu, gdje nema mjesta za sreću ili bilo koju drugu emociju. Sad. Nije da ignoriram da se osjećam loše. Jednostavno to prihvaćam. Puštam to unutra, kako bih to prihvatio, i učinio što moram kako bih to prevladao. Kada sam bio mlađi, htio sam biti inžinjer, htio sam biti izumitelj, koji bi katapultirao svijet u bolju budućnost. Možda je ovo došlo od moje ljubavi prema Lego kockicama, i slobode izražavanja koju sam osjećao kada sam gradio s njima. I ovo je također proizašlo od moje obitelji i mojih mentora, koji uvijek čine da se osjećam cijelim, i da se osjećam dobro u vezi sebe. Danas su se moje ambicije promijenile malo. Htio bih ući u polje biologije, možda molekularne biologije ili genetike, ili biokemije, ili zapravo bilo čega. Ovo je moj prijatelj, na kojega se ugledam. Francis Collins, upraviteljj u NIH, i ovo smo mi na TEDMED-u prošle godine, čavrljamo. Smatram da što god da odaberem postati, vjerujem da mogu promijenit svijet. I dok težim da promijenim svijet, biti ću sretan. Prije otprilike četiri godine, HBO je počeo snimati dokumentarac o mojoj obitelji i meni nazvan "Život prema Samu". To je bilo divno iskustvo, ali se to također dogodilo prije četiri godine. I kao svačiji, i moji pogledi na mnogo stvari su se promijenili, i nadam se da sam sazrio, kao i moj potencijalni izbor karijere. Ali ipak, neke stvari su ostale iste kroz vrijeme. Kao moj mentalitet, i filozofija prema životu. Tako da bih vam volio pokazati isječak mlađeg mene iz filma, za koji smatram da utjelovljuje tu filozofiju. (Video) Znam više o genetskom dijelu toga. Tako da je to sada manje utjelovljenje. To je nekad bilo ona stvar koja me sprječava da činim sve te stvari, koja čini da druga djeca umru, koja čini da su svi pod stresom, i sada je to protein koji je abnormalan, koji slabi strukturu stanica. Dakle, to skida teret s mene jer sada ne moram razmišljati o progeriji kao biću. Ok, vrlo dobro ha? (Pljesak) Hvala vam. Dakle, kao što vidite, razmišljam na taj način puno godina. Ali nikad nisam morao primjeniti sve aspekte moje filozofije od jednom, sve do prošlog siječnja. Bio sam prilično bolestan, imao sam prehladu i bio sam u bolnici par dana, i bio sam odvojen od aspekata mog života za koje sam osjećao da čine moje ja, koji su mi na neki način dali identitet. Ali znajući da ću se oporaviti, i veseleći se vremenu kada ću se ponovno osjećati dobro, pomoglo mi je da se nastavim kretati naprijed. I ponekad morao sam biti hrabar, i to nije uvijek bilo lako. Ponekad sam posustao, imao loših dana, ali shvatio sam da biti hrabar ne bi trebalo biti lako. I vjerujem da je za mene to ključni način kako ću se kretati naprijed. Dakle, sve u svemu, ne trošim energiju žaleći samog sebe. Okružujem se ljudima s kojima želim biti, i nastavljam se kretati naprijed. Sa ovom filozofijom, nadam se da ćete svi vi, bez obzira na svoje prepreke, imati vrlo sretan život također. O, čekajte, strpite se trenutak, još jedan savjet -- (Smijeh) Nikad ne propuštajte zabavu ako ne morate. Ples u mojoj školi je sutra navečer, i ja ću biti tamo. Hvala vam puno. (Pljesak)