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)
Zdravo svima. Ja sam Sem i skoro sam napunio 17 godina. Pre nekoliko godina, pre moje prve godine u srednjoj školi, želeo sam da sviram doboš u bendu za marširanje Foksboro srednje škole, i to je bio san koji sam jednostavno morao da ostvarim. Ali svaki doboš sa opremom imao je oko 18 kilograma, a ja imam bolest koja se zove progerija. Čisto da imate predstavu, ja imam samo oko 22 kilograma. Sa logističke strane, stvarno nisam mogao da nosim doboš redovne veličine, i vođa benda mi je zbog ovoga dodelio da sviram udaraljke tokom pauze na poluvremenu. Udaraljke su bile zabavne. Tu su bili neki stvarno kul pomoćni udarački instrumenti, poput bongoa, timpana, timbalesa i zvona. Bilo je zabavno, ali nije bilo marširanja, i ja sam bio razočaran. Ipak, ništa nije moglo da me spreči da sviram doboš sa bendom za marširanje na poluvremenu. Moja porodica i ja smo radili sa inženjerom da dizajniramo nosač za doboš koji bi bio lakši i jednostavniji za nošenje. Nakon neprekidnog rada, napravili smo napravu za doboš koja ima samo 2,7 kilograma. (Aplauz) Samo želim da vam pružim još neke informacije o progeriji. Danas je u svetu ima samo oko 350 dece. Prilično je retka, a posledice progerije su sledeće: tesna koža, nedostatak telesne mase, usporen rast i bolest srca. Prošle godine moja mama i njen tim naučnika su objavili prvo uspešno istraživanje o lečenju progerije, i zbog ovoga su me intervjuisali na Nacionalnom javnom radiju, i Džon Hamilton me je pitao: "Šta je najbitnija stvar koju ljudi treba da znaju u vezi sa tobom?" Moj odgovor je bio jednostavno da imam veoma srećan život. (Aplauz) Iako u mom životu postoji dosta prepreka, od kojih većinu stvara progerija, ne želim da me ljudi žale. Ne razmišljam uvek o preprekama, i svejedno mogu da prevaziđem većinu njih. Ovde sam danas da sa vama podelim moju filozofiju za srećan život. Za mene postoje 3 aspekta ove filozofije. Ovo je citat čuvenog Ferisa Bjulera. Prvi aspekat moje filozofije je to da sam se pomirio sa time šta na kraju ne mogu da uradim jer postoji toliko toga što mogu. Ljudi mi ponekad postavljaju pitanja poput: "Zar nije teško živeti sa progerijom?" ili "Sa kakvim izazovima se svaki dan suočavaš zbog progerije?" Voleo bih da kažem da iako imam progeriju, većinu vremena razmišljam o stvarima koje nemaju nikakve veze sa njom. Ovo ne znači da ignorišem negativne strane ovih prepreka. Kada ne mogu da uradim nešto, na primer da istrčim veliku razdaljinu ili odem na napetu vožnju toboganom, znam šta propuštam. Ali umesto toga biram da se fokusiram na aktivnosti koje mogu da radim kroz stvari za koje sam strastven, poput izviđanja, muzike ili stripova, ili bilo kog od mojih omiljenih sportskih timova iz Bostona. Onda dakle - (Smeh) Ipak, ponekad moram da pronađem drugačiji način da nešto uradim tako što se prilagođavam, i želim da stavim te stvari u kategoriju "može se uraditi". Nešto poput doboša kojeg ste malopre videli. Evo snimka mene kako sviram Spajdermena sa marširajućim bendom srednje škole Foksboro na poluvremenu pre par godina. (Video) ♫ Tema iz Spajdermena ♫ (Aplauz) Hvala vam. U redu, dakle - To je bilo prilično kul, i mogao sam da ostvarim svoj san da sviram doboš sa marširajućim bendom, kao što verujem da mogu da uradim za sve moje snove. Nadam se da i vi sa ovim stavom možete da ostvarite i svoje snove. Sledeći aspekat moje filozofije je da se okružujem ljudima sa kojima želim da budem, kvalitetnim ljudima. Veoma sam srećan što imam neverovatnu porodicu, koja me je uvek podržavala kroz ceo moj život. Takođe imam sreću da imam veoma blizak krug prijatelja u školi. Pomalo smo otkačeni, dosta nas smo štreberi iz benda, ali zaista uživamo u društvu jedni drugih, i pomažemo se međusobno kada je to potrebno. Jedni druge posmatramo onakve kakvi smo iznutra. Ovde se malo glupiramo. Sada smo treća godina srednje škole, i možemo da budemo mentori mlađim članovima benda, kao jedna posebna jedinica. Kod toga što sam u grupi mi se najviše sviđa to što je muzika koju zajedno stvaramo, prava, iskrena, i potiskuje progeriju. Ne moram da brinem o tome kada se osećam tako dobro dok stvaram muziku. Ali iako sam napravio dokumentarac koji je nekoliko puta bio na TV-u, osećam se najbolje kada sam s ljudima koji me okružuju svakoga dana. Oni daju pravi pozitivan uticaj u mom životu, i nadam se da i ja mogu da pružim pozitivan uticaj u njihovim životima. (Aplauz) Hvala vam. Kao zaključak, nadam se da cenite i volite svoju porodicu, volite svoje prijatelje, za vas momke, da volite svoju braću i odajete priznanje svojim mentorima i svojoj zajednici jer su oni veoma stvaran aspekat svakodnevnog života, mogu da učine veoma značajan, pozitivan uticaj. Treći aspekat moje filozofije je - nastavi da ideš napred. Evo jednog citata čoveka koga možda znate, Volta Diznija, i to je jedan od mojih omiljenih citata. Uvek se trudim da imam nešto čemu mogu da se radujem. Nešto čemu težim kako bih obogatio svoj život. To ne mora da bude veliko. Može da bude bilo šta, od toga da se radujete novom stripu koji treba da izađe ili odlasku na veliki porodični odmor, ili druženju sa svojim prijateljima, odlasku na sledeću fudbalsku utakmicu srednjoškolskog tima. Ipak, sve ove stvari me drže usredsređenim, i znam da je ispred svetla budućnost, i to može da me progura kroz neke teške periode koje možda imam. Ovaj mentalitet podrazumeva da ostanete u ovom stanju uma, gledanja unapred. Veoma se trudim da ne traćim snagu sažaljevajući samog sebe, jer kada radim to, zaglavim se u paradoksu, gde nema prostora za sreću ili bilo koju drugu emociju. Nije da ignorišem situacije kada se osećam loše, na neki način ih prihvatam, dopuštam ih, tako da mogu da ih potvrdim i uradim ono što moram da nastavim dalje. Kada sam bio mlađi, želeo sam da budem inženjer. Da budem pronalazač koji bi lansirao svet u bolju budućnost. Možda je ovo poteklo iz moje ljubavi prema LEGO kockama, i slobode izražavanja koju sam osećao kada sam gradio koristeći ih. Ovo je takođe poteklo od moje porodice i mentora, koji su uvek činili da se osećam ceo i dobro u vezi sa samim sobom. Moje ambicije su se danas pomalo izmenile, voleo bih da se bavim biologijom, možda ćelijskom biologijom ili genetikom, biohemijom ili čime god. Ovo je moj prijatelj na koga se ugledam, Frensis Kolins, direktor Nacionalnog insituta za zdravlje, a ovo smo mi kako ćaskamo prošle godine na TEDMED-u. Osećam se kao da šta god odaberem da postanem, verujem da mogu da promenim svet. A kako težim tome da promenim svet, biću srećan. Pre oko četiri godine, HBO je počeo da snima dokumetarac o meni i mojoj porodici sa nazivom "Život po Semu". To je bilo sjajno iskustvo, ali je i bilo pre četiri godine. I kao kod bilo koga drugog, moji pogledi na mnogo stvari su se promenili, i nadam se sazreli, kao i moj izbor potencijalne karijere. Ipak, kroz to vreme neke stvari su ostale iste. Poput mog mentaliteta i filozofije prema životu. Želeo bih da vam pokažem isečak mlađeg mene iz filma, za koji verujem da predstavlja tu filozofiju. (Video) O njoj znam više genetski. Tako da je to sada otelotvorenje u manjoj meri. To je bilo poput nečega što me sprečava da radim sve ove stvari, što prouzrokuje da druga deca umiru, da svi budu pod stresom, a sada je to protein koji je van granica normalnog, koji slabi strukturu ćelija. Dakle, to sada sa mene skida teret jer ne moram da mislim o progeriji kao licu. U redu, prilično dobro, zar ne? (Aplauz) Hvala vam. Kao što možete videti, na ovaj način mislim već nekoliko godina. Ali nikada nisam morao da primenim sve ove aspekte moje filozofije u jedno isto vreme, do prošlog januara. Bio sam prilično bolestan, imao sam zapaljenje pluća i bio sam nekoliko dana u bolnici, i bio sam izdvojen od svih aspekata mog života za koje sam mislio da čine mene onim što jesam, koji su mi davali identitet. Ali saznanje da će mi biti bolje, i radovanje vremenu kada ću se opet osećati dobro mi je pomoglo da nastavim da guram napred. Ponekad sam morao da budem hrabar, a to nije uvek bilo lako. Ponekad sam posrnuo, imao sam loše dane, ali sam shvatio da biti hrabar i ne treba da bude lako. Mislim da je za mene to ključni način da nastavim da idem napred. Sve u svemu, ne traćim energiju na samosažaljevanje. Okružujem se ljudima sa kojima želim da budem, i nastavljam da idem napred. Sa ovom filozofijom, nadam se da ćete i svi vi, bez obzira na vaše prepreke, moći da imate veoma srećan život. Ups, samo sekund, još jedan savet - (Smeh) Nikad nemojte da propustite žurku ako ne morate. Povratnička žurka moje škole je sutra uveče, i ja ću biti tamo. Hvala vam mnogo. (Aplauz)