1 00:00:18,023 --> 00:00:20,217 Hello everyone. 2 00:00:20,217 --> 00:00:21,634 I'm Sam, 3 00:00:21,634 --> 00:00:24,401 and I just turned 17. 4 00:00:24,401 --> 00:00:27,648 A few years ago, before my freshman year in High School, 5 00:00:27,648 --> 00:00:32,852 I wanted to play snare drum in the Foxboro High School Marching Band, 6 00:00:32,852 --> 00:00:35,589 and it was a dream that I just had to accomplish. 7 00:00:35,589 --> 00:00:37,852 But each snare drum and harness 8 00:00:37,852 --> 00:00:40,155 weighed about 40 pounds each, 9 00:00:40,155 --> 00:00:42,770 and I have a disease called Progeria. 10 00:00:42,770 --> 00:00:46,858 So just to give you an idea, I weigh only about 50 pounds. 11 00:00:46,858 --> 00:00:51,615 So, logistically, I really couldn't carry a regular sized snare drum, 12 00:00:51,615 --> 00:00:55,654 and because of this the band director assigned me to play 13 00:00:55,654 --> 00:00:59,005 pit percussion during the halftime show. 14 00:00:59,005 --> 00:01:01,110 Now pit percussion was fun. 15 00:01:01,110 --> 00:01:04,803 It involved some really cool auxiliary percussion instruments, 16 00:01:04,803 --> 00:01:08,623 like the bongos, timpani, 17 00:01:08,623 --> 00:01:11,107 and timbales, and cowbell. 18 00:01:11,107 --> 00:01:13,318 So it was fun, 19 00:01:13,318 --> 00:01:18,420 but it involved no marching, and I was just so devastated. 20 00:01:18,420 --> 00:01:20,914 However, nothing was going to stop me 21 00:01:20,914 --> 00:01:23,585 from playing snare drum with the marching band 22 00:01:23,585 --> 00:01:25,010 in the halftime show. 23 00:01:25,010 --> 00:01:29,865 So my family and I worked with an engineer to design 24 00:01:29,865 --> 00:01:31,793 a snare drum harness 25 00:01:31,793 --> 00:01:35,580 that would be lighter, and easier for me to carry. 26 00:01:35,580 --> 00:01:39,638 So after continuous work, we made 27 00:01:39,638 --> 00:01:43,859 a snare drum apparatus that weighs only about 6 pounds. 28 00:01:43,859 --> 00:01:48,129 (Applause) 29 00:01:48,129 --> 00:01:52,427 I just want to give you some more information about Progeria. 30 00:01:52,427 --> 00:01:58,340 It affects only about 350 kids today, worldwide. 31 00:01:58,340 --> 00:02:00,880 So it's pretty rare, 32 00:02:00,880 --> 00:02:03,335 and the effects of Progeria include: 33 00:02:03,335 --> 00:02:07,408 tight skin, lack of weight gain, stunted growth, 34 00:02:07,408 --> 00:02:09,011 and heart disease. 35 00:02:09,011 --> 00:02:12,586 Last year my Mom and her team of scientists 36 00:02:12,586 --> 00:02:16,725 published the first successful Progeria Treatment Study, 37 00:02:16,725 --> 00:02:19,460 and because of this I was interviewed on NPR, 38 00:02:19,460 --> 00:02:22,006 and John Hamilton asked me the question: 39 00:02:22,006 --> 00:02:24,272 "What is the most important thing 40 00:02:24,272 --> 00:02:26,538 that people should know about you?" 41 00:02:26,538 --> 00:02:29,264 And my answer was simply that 42 00:02:29,264 --> 00:02:31,691 I have a very happy life. 43 00:02:31,691 --> 00:02:35,762 (Applause) 44 00:02:35,762 --> 00:02:39,663 So even though there are many obstacles in my life, 45 00:02:39,663 --> 00:02:42,533 with a lot of them being created by Progeria, 46 00:02:42,533 --> 00:02:45,095 I don't want people to feel bad for me. 47 00:02:45,095 --> 00:02:47,802 I don't think about these obstacles all the time, 48 00:02:47,802 --> 00:02:51,007 and I'm able to overcome most of them anyway. 49 00:02:51,007 --> 00:02:56,132 So I’m here today, to share with you my philosophy for a happy life. 50 00:02:56,132 --> 00:03:00,757 So, for me, there are 3 aspects to this philosophy. 51 00:03:00,757 --> 00:03:04,830 So this is a quote from the famous Ferris Bueller. 52 00:03:04,830 --> 00:03:08,516 The first aspect to my philosophy is that 53 00:03:08,516 --> 00:03:11,552 I’m okay with what I ultimately can’t do 54 00:03:11,552 --> 00:03:14,032 because there is so much I can do. 55 00:03:14,032 --> 00:03:16,799 Now people sometimes ask me questions like, 56 00:03:16,799 --> 00:03:19,252 "Isn’t it hard living with Progeria?" or 57 00:03:19,252 --> 00:03:22,569 "What daily challenges of Progeria do you face?" 58 00:03:22,569 --> 00:03:26,053 And I’d like to say that, even though I have Progeria, 59 00:03:26,053 --> 00:03:28,686 most of my time is spent thinking about things 60 00:03:28,686 --> 00:03:31,534 that have nothing to do with Progeria at all. 61 00:03:31,534 --> 00:03:36,435 Now this doesn’t mean that I ignore the negative aspects of these obstacles. 62 00:03:36,435 --> 00:03:38,491 When I can’t do something like 63 00:03:38,491 --> 00:03:42,557 run a long distance, or go on an intense roller coaster, 64 00:03:42,557 --> 00:03:44,583 I know what I’m missing out on. 65 00:03:44,583 --> 00:03:48,499 But instead, I choose to focus on the activities 66 00:03:48,499 --> 00:03:52,276 that I can do through things that I’m passionate about, 67 00:03:52,276 --> 00:03:55,791 like scouting, or music, or comic books, 68 00:03:55,791 --> 00:03:58,756 or any of my favorite Boston sports teams. 69 00:03:58,756 --> 00:04:01,862 Yeah, so -- (Laughter) 70 00:04:01,862 --> 00:04:06,001 However, sometimes I need to find a different way to do something 71 00:04:06,001 --> 00:04:07,712 by making adjustments, 72 00:04:07,712 --> 00:04:11,799 and I want to put those things in the "can do" category. 73 00:04:11,799 --> 00:04:14,803 Kind of like you saw with the drum earlier. 74 00:04:14,803 --> 00:04:16,512 So here’s a clip 75 00:04:16,512 --> 00:04:18,951 with me playing Spider-Man 76 00:04:18,951 --> 00:04:21,760 with the Foxboro High School Marching Band 77 00:04:21,760 --> 00:04:23,864 at halftime a couple of years ago. 78 00:04:23,864 --> 00:04:25,968 (Video) 79 00:04:26,648 --> 00:04:32,026 ♫ Spider-Man theme song ♫ 80 00:05:07,115 --> 00:05:10,622 (Applause) 81 00:05:10,622 --> 00:05:12,548 Thank you. 82 00:05:12,548 --> 00:05:14,921 All right, all right, so -- 83 00:05:14,921 --> 00:05:16,226 That was pretty cool, 84 00:05:16,226 --> 00:05:19,561 and so I was able to accomplish my dream 85 00:05:19,561 --> 00:05:22,117 of playing snare drum with the marching band, 86 00:05:22,117 --> 00:05:25,009 as I believe I can do for all of my dreams. 87 00:05:25,009 --> 00:05:30,167 So hopefully, you can accomplish your dreams as well, with this outlook. 88 00:05:30,167 --> 00:05:32,382 The next aspect to my philosophy is 89 00:05:32,382 --> 00:05:36,818 that I surround myself with people I want to be with, 90 00:05:36,818 --> 00:05:38,634 people of high quality. 91 00:05:38,634 --> 00:05:42,680 I’m extremely lucky to have an amazing family, 92 00:05:42,680 --> 00:05:46,110 who have always supported me throughout my entire life. 93 00:05:46,110 --> 00:05:48,489 And I’m also really fortunate to have 94 00:05:48,489 --> 00:05:51,498 a really close group of friends at school. 95 00:05:51,498 --> 00:05:55,050 Now we’re kind of goofy, a lot of us are band geeks, 96 00:05:55,050 --> 00:05:57,412 but we really enjoy each other’s company, 97 00:05:57,412 --> 00:06:00,434 and we help each other out when we need to. 98 00:06:00,434 --> 00:06:04,562 We see each other for who we are on the inside. 99 00:06:04,562 --> 00:06:06,865 So this is us goofing off a little bit. 100 00:06:06,865 --> 00:06:09,372 So we’re juniors in High School now, 101 00:06:09,372 --> 00:06:15,129 and we can now mentor younger band members, 102 00:06:15,129 --> 00:06:16,986 as a single collective unit. 103 00:06:16,986 --> 00:06:19,916 What I love about being in a group like the band, 104 00:06:19,916 --> 00:06:22,834 is that the music that we make together, 105 00:06:22,834 --> 00:06:28,243 is true, is genuine, and it supersedes Progeria. 106 00:06:28,243 --> 00:06:29,875 So I don’t have to worry about that 107 00:06:29,875 --> 00:06:33,870 when I’m feeling so good about making music. 108 00:06:33,870 --> 00:06:36,564 But even having made a documentary, 109 00:06:36,564 --> 00:06:38,975 going on TV a couple of times, 110 00:06:38,975 --> 00:06:41,459 I feel like I’m at my highest point 111 00:06:41,459 --> 00:06:45,607 when I’m with the people that surround me every day. 112 00:06:45,607 --> 00:06:49,005 They provide the real positive influences in my life, 113 00:06:49,005 --> 00:06:54,699 as I hope I can provide a positive influence in theirs as well. 114 00:06:54,699 --> 00:06:58,247 (Applause) 115 00:06:58,247 --> 00:06:59,436 Thank you. 116 00:06:59,436 --> 00:07:01,395 So the bottom line here, 117 00:07:01,395 --> 00:07:05,294 is that I hope you appreciate and love your family, 118 00:07:05,294 --> 00:07:08,453 love your friends, for you guys, love you Bro’s 119 00:07:08,453 --> 00:07:11,860 and acknowledge your mentors, 120 00:07:11,860 --> 00:07:13,557 and your community, 121 00:07:13,557 --> 00:07:16,654 because they are a very real aspect of everyday life, 122 00:07:16,654 --> 00:07:20,980 they can make a truly significant, positive impact. 123 00:07:20,980 --> 00:07:23,663 The third aspect to the philosophy is, 124 00:07:23,663 --> 00:07:25,898 Keep moving forward. 125 00:07:25,898 --> 00:07:29,686 Here’s a quote by a man you may know, named Walt Disney, 126 00:07:29,686 --> 00:07:31,495 and it’s one of my favorite quotes. 127 00:07:31,495 --> 00:07:34,230 I always try to have something to look forward to. 128 00:07:34,230 --> 00:07:37,265 Something to strive for to make my life richer. 129 00:07:37,265 --> 00:07:38,956 It doesn’t have to be big. 130 00:07:38,956 --> 00:07:41,339 It could be anything from 131 00:07:41,339 --> 00:07:43,946 looking forward to the next comic book to come out, 132 00:07:43,946 --> 00:07:46,467 or going on a large family vacation, 133 00:07:46,467 --> 00:07:48,736 or hanging out with my friends, 134 00:07:48,736 --> 00:07:51,691 to going to the next High School football game. 135 00:07:51,691 --> 00:07:55,013 However, all of these things keep me focused, 136 00:07:55,013 --> 00:07:57,851 and know that there’s a bright future ahead, 137 00:07:57,851 --> 00:08:02,287 and may get me through some difficult times that I may be having. 138 00:08:02,287 --> 00:08:07,795 Now this mentality includes staying in a forward thinking state of mind. 139 00:08:07,795 --> 00:08:11,389 I try hard not to waste energy feeling badly for myself, 140 00:08:11,389 --> 00:08:14,871 because when I do, I get stuck in a paradox, 141 00:08:14,871 --> 00:08:19,454 where there’s no room for any happiness or any other emotion. 142 00:08:19,454 --> 00:08:23,015 Now, it’s not that I ignore when I’m feeling badly, 143 00:08:23,015 --> 00:08:24,897 I kind of accept it, 144 00:08:24,897 --> 00:08:28,273 I let it in, so that I can acknowledge it, 145 00:08:28,273 --> 00:08:31,775 and do what I need to do to move past it. 146 00:08:31,775 --> 00:08:35,081 When I was younger, I wanted to be an engineer. 147 00:08:35,081 --> 00:08:36,995 I wanted to be an inventor, 148 00:08:36,995 --> 00:08:40,009 who would catapult the world into a better future. 149 00:08:40,009 --> 00:08:42,184 Maybe this came from my love of Legos, 150 00:08:42,184 --> 00:08:44,502 and the freedom of expression that I felt 151 00:08:44,502 --> 00:08:47,814 when I was building with them. 152 00:08:47,814 --> 00:08:53,489 And this was also derived from my family and my mentors, 153 00:08:53,489 --> 00:08:57,985 who always make me feel whole, and good about myself. 154 00:08:57,985 --> 00:09:01,133 Now today my ambitions have changed a little bit, 155 00:09:01,133 --> 00:09:03,609 I’d like to go into the field of Biology, 156 00:09:03,609 --> 00:09:07,948 maybe cell biology, or genetics, 157 00:09:07,948 --> 00:09:12,417 or biochemistry, or really anything. 158 00:09:12,417 --> 00:09:15,698 This is a friend of mine, who I look up to, 159 00:09:15,698 --> 00:09:19,252 Francis Collins, the director of the NIH, 160 00:09:19,252 --> 00:09:22,670 and this is us at TEDMED last year, chatting away. 161 00:09:22,670 --> 00:09:26,208 I feel that no matter what I choose to become, 162 00:09:26,208 --> 00:09:29,521 I believe that I can change the world. 163 00:09:29,521 --> 00:09:34,417 And as I’m striving to change the world, I will be happy. 164 00:09:34,417 --> 00:09:36,562 About four years ago, 165 00:09:36,562 --> 00:09:39,247 HBO began to film a documentary 166 00:09:39,247 --> 00:09:42,282 about my family and me called “Life According to Sam”. 167 00:09:42,282 --> 00:09:46,285 That was a pretty great experience, but it was also four years ago. 168 00:09:46,285 --> 00:09:49,761 And like anyone, my views on many things have changed, 169 00:09:49,761 --> 00:09:54,165 and hopefully matured, like my potential career choice. 170 00:09:54,165 --> 00:09:58,798 However, some things have stayed the same throughout that time. 171 00:09:58,798 --> 00:10:02,679 Like my mentality, and philosophy towards life. 172 00:10:02,679 --> 00:10:04,730 So I would like to show you 173 00:10:04,730 --> 00:10:07,921 a clip of my younger self from the film, 174 00:10:07,921 --> 00:10:11,492 that I feel embodies that philosophy. 175 00:10:11,492 --> 00:10:12,659 (Video) 176 00:10:12,659 --> 00:10:16,314 I know more about it genetically. 177 00:10:16,314 --> 00:10:19,857 So it’s less of an embodiment now. 178 00:10:19,857 --> 00:10:21,335 It used to be like 179 00:10:21,335 --> 00:10:24,135 this thing that prevents me from doing all this stuff, 180 00:10:24,135 --> 00:10:26,669 that causes other kids to die, 181 00:10:26,669 --> 00:10:29,639 that causes everybody to be stressed, 182 00:10:29,639 --> 00:10:35,276 and now it’s a protein that is abnormal, 183 00:10:35,276 --> 00:10:39,072 that weakens the structure of cells. 184 00:10:40,465 --> 00:10:42,076 So, 185 00:10:42,076 --> 00:10:45,458 and it takes a burden off of me because now 186 00:10:45,458 --> 00:10:48,210 I don’t have to think about 187 00:10:48,210 --> 00:10:51,802 Progeria as an entity. 188 00:10:55,905 --> 00:10:57,507 Okay, pretty good, huh? 189 00:10:57,507 --> 00:11:01,596 (Applause) 190 00:11:01,596 --> 00:11:02,671 Thank you. 191 00:11:02,671 --> 00:11:05,990 So, as you can see I’ve been thinking this way for many years. 192 00:11:05,990 --> 00:11:10,435 But I’d never really had to apply all of these aspects of my philosophy 193 00:11:10,435 --> 00:11:14,176 to the test at one time, until last January. 194 00:11:14,176 --> 00:11:19,010 I was pretty sick, I had a chest cold, and I was in the hospital for a few days, 195 00:11:19,010 --> 00:11:23,600 and I was secluded from all of the aspects of my life that I felt 196 00:11:23,600 --> 00:11:25,124 made me, me, 197 00:11:25,124 --> 00:11:27,952 that kind of gave me my identity. 198 00:11:27,952 --> 00:11:31,029 But knowing that I was going to get better, 199 00:11:31,029 --> 00:11:34,009 and looking forward to a time that I would feel good again, 200 00:11:34,009 --> 00:11:36,659 helped me to keep moving forward. 201 00:11:36,659 --> 00:11:39,211 And sometimes I had to be brave, 202 00:11:39,211 --> 00:11:41,003 and it wasn’t always easy. 203 00:11:41,003 --> 00:11:42,617 Sometimes I faltered, 204 00:11:42,617 --> 00:11:44,363 I had bad days, 205 00:11:44,363 --> 00:11:47,857 but I realized that being brave isn’t supposed to be easy. 206 00:11:47,857 --> 00:11:51,957 And for me, I feel it’s the key way to keep moving forward. 207 00:11:51,957 --> 00:11:54,181 So, all in all, 208 00:11:54,181 --> 00:11:57,725 I don’t waste energy feeling bad for myself. 209 00:11:57,725 --> 00:12:01,040 I surround myself with people that I want to be with, 210 00:12:01,040 --> 00:12:03,317 and I keep moving forward. 211 00:12:03,317 --> 00:12:06,689 So with this philosophy, I hope that all of you, 212 00:12:06,689 --> 00:12:08,766 regardless of your obstacles, 213 00:12:08,766 --> 00:12:11,613 can have a very happy life as well. 214 00:12:11,613 --> 00:12:13,131 Oh, wait, hang on a second, 215 00:12:13,131 --> 00:12:15,619 one more piece of advice –- 216 00:12:15,619 --> 00:12:17,219 (Laughter) 217 00:12:17,219 --> 00:12:19,709 Never miss a party if you can help it. 218 00:12:19,709 --> 00:12:22,085 My school’s homecoming dance is tomorrow night, 219 00:12:22,085 --> 00:12:24,169 and I will be there. 220 00:12:24,169 --> 00:12:25,641 Thank you very much. 221 00:12:25,641 --> 00:12:31,295 (Applause)