1 00:00:01,566 --> 00:00:04,266 GEOFF BENNETT: Some 30,000 Americans have been diagnosed with ALS, 2 00:00:04,266 --> 00:00:08,733 a rare neurodegenerative condition also known as Lou Gehrig's disease. 3 00:00:08,733 --> 00:00:13,466 As researchers work toward a cure, one patient is raising millions for the cause, 4 00:00:13,466 --> 00:00:16,200 while he also reckons with his own mortality. 5 00:00:16,200 --> 00:00:21,200 Judy Woodruff reports as part of our series Disability Reframed. 6 00:00:22,366 --> 00:00:23,900 JUDY WOODRUFF: The High Line in New 7 00:00:23,900 --> 00:00:27,366 York represents a rebirth for the city in the 21st century. 8 00:00:27,366 --> 00:00:31,566 DAN DOCTOROFF, Former New York Deputy Mayor: The High Line was an abandoned freight line. 9 00:00:31,566 --> 00:00:36,466 JUDY WOODRUFF: That sat dormant for decades before the city's former deputy mayor, 10 00:00:36,466 --> 00:00:41,433 Dan Doctoroff, led a project to transform the area into a six-acre park and green space. 11 00:00:43,766 --> 00:00:48,733 It is one of the hundreds of projects across New York that bears Doctoroff's fingerprints, 12 00:00:50,800 --> 00:00:54,266 from the Hudson Yards neighborhood, to the new Yankee Stadium, and the World Trade Center. 13 00:00:56,833 --> 00:01:01,166 DAN DOCTOROFF: I have always been a pretty good juggler, doing multiple things at the same time. 14 00:01:04,066 --> 00:01:08,833 MICHAEL BLOOMBERG (I), Former Mayor of New York: He made things possible. He gave people hope. 15 00:01:08,833 --> 00:01:11,866 JUDY WOODRUFF: Former New York City Mayor Michael Bloomberg 16 00:01:11,866 --> 00:01:16,866 says the man he asked to join his team in 2002 transformed parts of the city. 17 00:01:18,866 --> 00:01:21,600 MICHAEL BLOOMBERG: Dan was a role model. And one of the great things about Dan is, 18 00:01:21,600 --> 00:01:25,700 he shows what's possible, and then the city is big 19 00:01:25,700 --> 00:01:29,833 enough to accommodate plenty of people who will then go and try. 20 00:01:29,833 --> 00:01:34,833 JUDY WOODRUFF: But now Doctoroff faces his most daunting challenge yet: In 2021, 21 00:01:36,266 --> 00:01:41,233 he was diagnosed with ALS. Also known as Lou Gehrig's disease, 22 00:01:43,300 --> 00:01:46,700 ALS erodes nerve cells in the brain and spinal cord, weakening muscles, until a person can only 23 00:01:48,966 --> 00:01:53,933 blink his eyes. There is no cure, with a typical life expectancy between two and five years. 24 00:01:57,033 --> 00:02:02,000 These days, Doctoroff, who he says spent much of his life focusing on what came next, 25 00:02:03,166 --> 00:02:05,333 is forced to reckon with the present. 26 00:02:05,333 --> 00:02:10,333 DAN DOCTOROFF: I have always been somebody who focuses on the future, so much so that 27 00:02:12,433 --> 00:02:17,433 I never really enjoyed anything I achieved, because it was always on to the next thing. 28 00:02:19,400 --> 00:02:24,100 But when I was diagnosed, I stopped thinking about the future a lot. And 29 00:02:26,133 --> 00:02:30,833 I really don't think about the course of the disease. I live more day to day. 30 00:02:35,200 --> 00:02:39,133 JUDY WOODRUFF: How has your daily life changed? 31 00:02:39,133 --> 00:02:43,500 The daily routine of your life, how has that changed? 32 00:02:43,500 --> 00:02:48,500 DAN DOCTOROFF: I can't do a lot of things that I love to do, like biking, walking, 33 00:02:52,033 --> 00:02:57,000 things that require a lot of physical exertion. But I have learned to adapt. 34 00:02:58,866 --> 00:03:02,466 JUDY WOODRUFF: That adaptation includes an exercise routine to 35 00:03:02,466 --> 00:03:07,466 make sure his body can make it through the day, a cough-assist machine to help 36 00:03:09,033 --> 00:03:13,933 clear his lungs morning and night, and a regimen of 20 pills a day. 37 00:03:16,800 --> 00:03:21,800 Doctoroff still maintains a busy, albeit scaled-back, schedule. He now rides a Vespa 38 00:03:23,766 --> 00:03:27,500 motorbike around his Upper West Side neighborhood to meetings. But most of 39 00:03:27,500 --> 00:03:32,500 his effort is focused on Target ALS, his nonprofit raising money for ALS research. 40 00:03:34,933 --> 00:03:39,933 Doctoroff founded the organization in 2013, long before his own diagnosis, 41 00:03:41,366 --> 00:03:45,800 but after his father and then his uncle both died of ALS. 42 00:03:47,900 --> 00:03:50,900 DAN DOCTOROFF: My most important legacy will be making a contribution to eradicating ALS, because 43 00:03:54,266 --> 00:03:59,233 it is so personal. One in 400 people are going to get the disease if we don't find treatments. 44 00:04:01,266 --> 00:04:06,100 JUDY WOODRUFF: Two years ago, he set a fund-raising goal of $250 million, 45 00:04:07,700 --> 00:04:11,333 which at the time of our interview was more than 90 percent complete. 46 00:04:13,266 --> 00:04:16,500 Much of the current cutting-edge research on ALS happens here at Johns Hopkins University 47 00:04:18,333 --> 00:04:22,500 in Baltimore at a center run by Dr. Jeffrey Rothstein. Rothstein himself 48 00:04:24,433 --> 00:04:28,433 diagnosed Doctoroff and works with hundreds of men and women who have the disease. 49 00:04:31,000 --> 00:04:33,033 DR. JEFFREY ROTHSTEIN, Johns Hopkins University: ALS patients are America. There's a full range of 50 00:04:33,033 --> 00:04:37,633 what I see in my clinic, from top athletes to brilliant attorneys to couch potatoes. 51 00:04:39,500 --> 00:04:43,600 When it comes to this disease, no one's, in a sense, unique. They suffer from a 52 00:04:43,600 --> 00:04:47,566 disease that's robbing their ability to move, walk, and breathe and speak. 53 00:04:47,566 --> 00:04:52,566 JUDY WOODRUFF: ALS, discovered in the late 19th century. Lou Gehrig comes along; 54 00:04:53,733 --> 00:04:57,833 82 years ago, he died of ALS. Since then, 55 00:04:59,833 --> 00:05:02,666 how much progress has been made in understanding and treating this disease? 56 00:05:02,666 --> 00:05:05,200 DR. JEFFREY ROTHSTEIN: An enormous amount of progress in understanding the disease 57 00:05:05,200 --> 00:05:10,200 has occurred. We know the different inherited forms of the disease. We know the genes that 58 00:05:10,200 --> 00:05:15,200 cause many of the inherited forms. We know a lot about how the gene defects actually lead 59 00:05:17,333 --> 00:05:20,533 to injury to the nervous system, the more common sporadic form, which is about 90 percent of ALS. 60 00:05:21,666 --> 00:05:24,600 We also know much about the pathways. That, 61 00:05:24,600 --> 00:05:29,466 however, has not been converted into very effective drugs. So, lots of science known, 62 00:05:31,033 --> 00:05:33,733 but converting science into drugs is a far greater challenge. 63 00:05:33,733 --> 00:05:38,733 JUDY WOODRUFF: A challenge Doctoroff's organization, Target ALS, is hoping to bridge. 64 00:05:40,366 --> 00:05:41,900 DR. JEFFREY ROTHSTEIN: There was no coupling, or no good coupling, 65 00:05:41,900 --> 00:05:45,866 between pharma, pharmaceutical companies, and academics. That 66 00:05:45,866 --> 00:05:50,866 was what Dan really did in a great way. He brought us together in novel ways, 67 00:05:52,733 --> 00:05:56,100 provided unique funding to bring pharma and academics together in collaborative units. 68 00:05:57,533 --> 00:05:58,966 LORA CLAWSON, Johns Hopkins University: Could benefit from 69 00:05:58,966 --> 00:06:01,333 using speech assist device like Google or Siri. 70 00:06:01,333 --> 00:06:06,333 JUDY WOODRUFF: Lora Clawson is director of ALS clinical services at Johns Hopkins. 71 00:06:08,266 --> 00:06:11,633 The facility offers treatment therapies and therapeutic drugs, among a range of surfaces. 72 00:06:13,633 --> 00:06:16,800 LORA CLAWSON: Once the patient is diagnosed, they're referred into the multidisciplinary 73 00:06:16,800 --> 00:06:21,800 clinic, where they're evaluated by a multitude of specialists. We also 74 00:06:23,800 --> 00:06:27,533 sign them into a database to screen them for any clinical research trials that we have. 75 00:06:29,466 --> 00:06:33,800 JUDY WOODRUFF: But even clinical trials can only hope to slow progression of ALS. 76 00:06:35,366 --> 00:06:37,666 LORA CLAWSON: It's devastating to hear the nature of this disease, 77 00:06:37,666 --> 00:06:42,666 the functional living needs that they have. Feeding, dressing, bathing, 78 00:06:44,633 --> 00:06:47,633 being able to mount the courage to get out of bed in the morning is difficult. 79 00:06:47,633 --> 00:06:52,633 JUDY WOODRUFF: A picture of that courage is 80-year-old Fred Carlson. The 30-year Army 80 00:06:54,600 --> 00:06:57,933 veteran and former marathon runner was diagnosed with ALS in 2008, but has defied the odds. 81 00:07:01,233 --> 00:07:05,233 FRED CARLSON, ALS Patient: It's rough. And you have to adjust your whole life 82 00:07:05,233 --> 00:07:09,700 to everything. Like, I'm in a wheelchair all the 83 00:07:09,700 --> 00:07:14,700 time now. And the only relief I get is maybe transferring to a recliner. 84 00:07:16,300 --> 00:07:19,800 Being confined to a wheelchair is tough, 85 00:07:19,800 --> 00:07:24,800 but I look on the positive side and try to enjoy life as much as I can. 86 00:07:26,766 --> 00:07:29,733 JUDY WOODRUFF: Carlson gives credit to others, including his service dog, 87 00:07:29,733 --> 00:07:34,733 Marley, but especially his wife of 52 years, Mary Jo. 88 00:07:35,933 --> 00:07:37,966 FRED CARLSON: I have to rely on her quite a bit. 89 00:07:37,966 --> 00:07:40,066 MARY JO CARLSON, Wife of Fred Carlson: Which, after 52 years of marriage, 90 00:07:40,066 --> 00:07:44,700 is hard. It's hard for Fred that he has to rely on me to do everything. 91 00:07:44,700 --> 00:07:48,666 And I think there are times where he sees things to be done and he wants to do them, 92 00:07:48,666 --> 00:07:51,333 but he can't. So then it goes on to my list. 93 00:07:51,333 --> 00:07:56,333 JUDY WOODRUFF: What would you say to someone who's watching this right now and wondering? 94 00:07:58,833 --> 00:08:03,433 FRED CARLSON: They say that normal progression or life span is two to five years after diagnosis, 95 00:08:06,800 --> 00:08:11,800 but that's not true. I have been on this journey for 14 years. ALS is different 96 00:08:13,800 --> 00:08:17,233 for everybody. And take it one day at a time and live life to the fullest. 97 00:08:21,100 --> 00:08:26,100 JUDY WOODRUFF: Which is what Dan Doctoroff plans on doing with his expanding family. 98 00:08:27,400 --> 00:08:31,400 DAN DOCTOROFF: I was diagnosed the same weekend as 99 00:08:31,400 --> 00:08:36,400 my first granddaughter was born. I just revel in her presence. 100 00:08:37,833 --> 00:08:40,266 JUDY WOODRUFF: He now has a second grandchild and 101 00:08:40,266 --> 00:08:43,966 he says he's not thinking about the future anymore. 102 00:08:43,966 --> 00:08:48,966 DAN DOCTOROFF: I'm going to do everything I can to extend my life, even if it's going on 103 00:08:51,000 --> 00:08:56,000 a permanent ventilator, feeding tube, being paralyzed and only being able to communicate 104 00:08:58,033 --> 00:09:03,033 with my eyes. I will take that option, because I want to live. I want to see them grow up. 105 00:09:10,700 --> 00:09:15,700 And I think I can contribute, even as I get sicker. 106 00:09:17,066 --> 00:09:21,100 JUDY WOODRUFF: And squeeze every bit of life that there is. 107 00:09:22,633 --> 00:09:25,566 DAN DOCTOROFF: Totally, every bit of life, and do it day by day. 108 00:09:25,566 --> 00:09:29,200 JUDY WOODRUFF: Days he is savoring more than ever. 109 00:09:29,200 --> 00:09:34,200 For the "PBS NewsHour," I'm Judy Woodruff in New York City.