WEBVTT 00:01.566 --> 00:04.266 align:left position:20% line:77% size:70% GEOFF BENNETT: Some 30,000 Americans have been diagnosed with ALS, 00:04.266 --> 00:08.733 align:left position:20% line:77% size:70% a rare neurodegenerative condition also known as Lou Gehrig's disease. 00:08.733 --> 00:13.466 align:left position:10% line:77% size:80% As researchers work toward a cure, one patient is raising millions for the cause, 00:13.466 --> 00:16.200 align:left position:20% line:83% size:70% while he also reckons with his own mortality. 00:16.200 --> 00:21.200 align:left position:10% line:83% size:80% Judy Woodruff reports as part of our series Disability Reframed. 00:22.366 --> 00:23.900 align:left position:20% line:83% size:70% JUDY WOODRUFF: The High Line in New 00:23.900 --> 00:27.366 align:left position:10% line:83% size:80% York represents a rebirth for the city in the 21st century. 00:27.366 --> 00:31.566 align:left position:10% line:77% size:80% DAN DOCTOROFF, Former New York Deputy Mayor: The High Line was an abandoned freight line. 00:31.566 --> 00:36.466 align:left position:10% line:77% size:80% JUDY WOODRUFF: That sat dormant for decades before the city's former deputy mayor, 00:36.466 --> 00:41.433 align:left position:10% line:77% size:80% Dan Doctoroff, led a project to transform the area into a six-acre park and green space. 00:43.766 --> 00:48.733 align:left position:10% line:77% size:80% It is one of the hundreds of projects across New York that bears Doctoroff's fingerprints, 00:50.800 --> 00:54.266 align:left position:20% line:71% size:70% from the Hudson Yards neighborhood, to the new Yankee Stadium, and the World Trade Center. 00:56.833 --> 01:01.166 align:left position:10% line:71% size:80% DAN DOCTOROFF: I have always been a pretty good juggler, doing multiple things at the same time. 01:04.066 --> 01:08.833 align:left position:10% line:71% size:80% MICHAEL BLOOMBERG (I), Former Mayor of New York: He made things possible. He gave people hope. 01:08.833 --> 01:11.866 align:left position:10% line:83% size:80% JUDY WOODRUFF: Former New York City Mayor Michael Bloomberg 01:11.866 --> 01:16.866 align:left position:10% line:77% size:80% says the man he asked to join his team in 2002 transformed parts of the city. 01:18.866 --> 01:21.600 align:left position:10% line:77% size:80% MICHAEL BLOOMBERG: Dan was a role model. And one of the great things about Dan is, 01:21.600 --> 01:25.700 align:left position:10% line:83% size:80% he shows what's possible, and then the city is big 01:25.700 --> 01:29.833 align:left position:10% line:83% size:80% enough to accommodate plenty of people who will then go and try. 01:29.833 --> 01:34.833 align:left position:10% line:77% size:80% JUDY WOODRUFF: But now Doctoroff faces his most daunting challenge yet: In 2021, 01:36.266 --> 01:41.233 align:left position:10% line:83% size:80% he was diagnosed with ALS. Also known as Lou Gehrig's disease, 01:43.300 --> 01:46.700 align:left position:10% line:77% size:80% ALS erodes nerve cells in the brain and spinal cord, weakening muscles, until a person can only 01:48.966 --> 01:53.933 align:left position:20% line:71% size:70% blink his eyes. There is no cure, with a typical life expectancy between two and five years. 01:57.033 --> 02:02.000 align:left position:10% line:77% size:80% These days, Doctoroff, who he says spent much of his life focusing on what came next, 02:03.166 --> 02:05.333 align:left position:20% line:83% size:70% is forced to reckon with the present. 02:05.333 --> 02:10.333 align:left position:10% line:77% size:80% DAN DOCTOROFF: I have always been somebody who focuses on the future, so much so that 02:12.433 --> 02:17.433 align:left position:10% line:77% size:80% I never really enjoyed anything I achieved, because it was always on to the next thing. 02:19.400 --> 02:24.100 align:left position:10% line:77% size:80% But when I was diagnosed, I stopped thinking about the future a lot. And 02:26.133 --> 02:30.833 align:left position:10% line:77% size:80% I really don't think about the course of the disease. I live more day to day. 02:35.200 --> 02:39.133 align:left position:20% line:83% size:70% JUDY WOODRUFF: How has your daily life changed? 02:39.133 --> 02:43.500 align:left position:10% line:83% size:80% The daily routine of your life, how has that changed? 02:43.500 --> 02:48.500 align:left position:10% line:77% size:80% DAN DOCTOROFF: I can't do a lot of things that I love to do, like biking, walking, 02:52.033 --> 02:57.000 align:left position:10% line:77% size:80% things that require a lot of physical exertion. But I have learned to adapt. 02:58.866 --> 03:02.466 align:left position:10% line:83% size:80% JUDY WOODRUFF: That adaptation includes an exercise routine to 03:02.466 --> 03:07.466 align:left position:10% line:77% size:80% make sure his body can make it through the day, a cough-assist machine to help 03:09.033 --> 03:13.933 align:left position:20% line:77% size:70% clear his lungs morning and night, and a regimen of 20 pills a day. 03:16.800 --> 03:21.800 align:left position:10% line:77% size:80% Doctoroff still maintains a busy, albeit scaled-back, schedule. He now rides a Vespa 03:23.766 --> 03:27.500 align:left position:10% line:77% size:80% motorbike around his Upper West Side neighborhood to meetings. But most of 03:27.500 --> 03:32.500 align:left position:10% line:77% size:80% his effort is focused on Target ALS, his nonprofit raising money for ALS research. 03:34.933 --> 03:39.933 align:left position:10% line:77% size:80% Doctoroff founded the organization in 2013, long before his own diagnosis, 03:41.366 --> 03:45.800 align:left position:10% line:83% size:80% but after his father and then his uncle both died of ALS. 03:47.900 --> 03:50.900 align:left position:20% line:71% size:70% DAN DOCTOROFF: My most important legacy will be making a contribution to eradicating ALS, because 03:54.266 --> 03:59.233 align:left position:20% line:71% size:70% it is so personal. One in 400 people are going to get the disease if we don't find treatments. 04:01.266 --> 04:06.100 align:left position:10% line:77% size:80% JUDY WOODRUFF: Two years ago, he set a fund-raising goal of $250 million, 04:07.700 --> 04:11.333 align:left position:20% line:77% size:70% which at the time of our interview was more than 90 percent complete. 04:13.266 --> 04:16.500 align:left position:10% line:77% size:80% Much of the current cutting-edge research on ALS happens here at Johns Hopkins University 04:18.333 --> 04:22.500 align:left position:10% line:77% size:80% in Baltimore at a center run by Dr. Jeffrey Rothstein. Rothstein himself 04:24.433 --> 04:28.433 align:left position:10% line:77% size:80% diagnosed Doctoroff and works with hundreds of men and women who have the disease. 04:31.000 --> 04:33.033 align:left position:10% line:71% size:80% DR. JEFFREY ROTHSTEIN, Johns Hopkins University: ALS patients are America. There's a full range of 04:33.033 --> 04:37.633 align:left position:10% line:77% size:80% what I see in my clinic, from top athletes to brilliant attorneys to couch potatoes. 04:39.500 --> 04:43.600 align:left position:10% line:77% size:80% When it comes to this disease, no one's, in a sense, unique. They suffer from a 04:43.600 --> 04:47.566 align:left position:10% line:77% size:80% disease that's robbing their ability to move, walk, and breathe and speak. 04:47.566 --> 04:52.566 align:left position:10% line:77% size:80% JUDY WOODRUFF: ALS, discovered in the late 19th century. Lou Gehrig comes along; 04:53.733 --> 04:57.833 align:left position:20% line:83% size:70% 82 years ago, he died of ALS. Since then, 04:59.833 --> 05:02.666 align:left position:10% line:77% size:80% how much progress has been made in understanding and treating this disease? 05:02.666 --> 05:05.200 align:left position:10% line:77% size:80% DR. JEFFREY ROTHSTEIN: An enormous amount of progress in understanding the disease 05:05.200 --> 05:10.200 align:left position:10% line:77% size:80% has occurred. We know the different inherited forms of the disease. We know the genes that 05:10.200 --> 05:15.200 align:left position:10% line:77% size:80% cause many of the inherited forms. We know a lot about how the gene defects actually lead 05:17.333 --> 05:20.533 align:left position:20% line:71% size:70% to injury to the nervous system, the more common sporadic form, which is about 90 percent of ALS. 05:21.666 --> 05:24.600 align:left position:20% line:83% size:70% We also know much about the pathways. That, 05:24.600 --> 05:29.466 align:left position:10% line:77% size:80% however, has not been converted into very effective drugs. So, lots of science known, 05:31.033 --> 05:33.733 align:left position:20% line:77% size:70% but converting science into drugs is a far greater challenge. 05:33.733 --> 05:38.733 align:left position:10% line:77% size:80% JUDY WOODRUFF: A challenge Doctoroff's organization, Target ALS, is hoping to bridge. 05:40.366 --> 05:41.900 align:left position:20% line:77% size:70% DR. JEFFREY ROTHSTEIN: There was no coupling, or no good coupling, 05:41.900 --> 05:45.866 align:left position:10% line:83% size:80% between pharma, pharmaceutical companies, and academics. That 05:45.866 --> 05:50.866 align:left position:10% line:77% size:80% was what Dan really did in a great way. He brought us together in novel ways, 05:52.733 --> 05:56.100 align:left position:10% line:77% size:80% provided unique funding to bring pharma and academics together in collaborative units. 05:57.533 --> 05:58.966 align:left position:10% line:83% size:80% LORA CLAWSON, Johns Hopkins University: Could benefit from 05:58.966 --> 06:01.333 align:left position:10% line:83% size:80% using speech assist device like Google or Siri. 06:01.333 --> 06:06.333 align:left position:10% line:77% size:80% JUDY WOODRUFF: Lora Clawson is director of ALS clinical services at Johns Hopkins. 06:08.266 --> 06:11.633 align:left position:10% line:77% size:80% The facility offers treatment therapies and therapeutic drugs, among a range of surfaces. 06:13.633 --> 06:16.800 align:left position:10% line:77% size:80% LORA CLAWSON: Once the patient is diagnosed, they're referred into the multidisciplinary 06:16.800 --> 06:21.800 align:left position:20% line:77% size:70% clinic, where they're evaluated by a multitude of specialists. We also 06:23.800 --> 06:27.533 align:left position:10% line:77% size:80% sign them into a database to screen them for any clinical research trials that we have. 06:29.466 --> 06:33.800 align:left position:10% line:77% size:80% JUDY WOODRUFF: But even clinical trials can only hope to slow progression of ALS. 06:35.366 --> 06:37.666 align:left position:20% line:77% size:70% LORA CLAWSON: It's devastating to hear the nature of this disease, 06:37.666 --> 06:42.666 align:left position:10% line:77% size:80% the functional living needs that they have. Feeding, dressing, bathing, 06:44.633 --> 06:47.633 align:left position:10% line:77% size:80% being able to mount the courage to get out of bed in the morning is difficult. 06:47.633 --> 06:52.633 align:left position:10% line:77% size:80% JUDY WOODRUFF: A picture of that courage is 80-year-old Fred Carlson. The 30-year Army 06:54.600 --> 06:57.933 align:left position:10% line:77% size:80% veteran and former marathon runner was diagnosed with ALS in 2008, but has defied the odds. 07:01.233 --> 07:05.233 align:left position:10% line:77% size:80% FRED CARLSON, ALS Patient: It's rough. And you have to adjust your whole life 07:05.233 --> 07:09.700 align:left position:20% line:83% size:70% to everything. Like, I'm in a wheelchair all the 07:09.700 --> 07:14.700 align:left position:10% line:77% size:80% time now. And the only relief I get is maybe transferring to a recliner. 07:16.300 --> 07:19.800 align:left position:20% line:83% size:70% Being confined to a wheelchair is tough, 07:19.800 --> 07:24.800 align:left position:10% line:77% size:80% but I look on the positive side and try to enjoy life as much as I can. 07:26.766 --> 07:29.733 align:left position:10% line:77% size:80% JUDY WOODRUFF: Carlson gives credit to others, including his service dog, 07:29.733 --> 07:34.733 align:left position:10% line:83% size:80% Marley, but especially his wife of 52 years, Mary Jo. 07:35.933 --> 07:37.966 align:left position:20% line:83% size:70% FRED CARLSON: I have to rely on her quite a bit. 07:37.966 --> 07:40.066 align:left position:10% line:77% size:80% MARY JO CARLSON, Wife of Fred Carlson: Which, after 52 years of marriage, 07:40.066 --> 07:44.700 align:left position:20% line:77% size:70% is hard. It's hard for Fred that he has to rely on me to do everything. 07:44.700 --> 07:48.666 align:left position:10% line:77% size:80% And I think there are times where he sees things to be done and he wants to do them, 07:48.666 --> 07:51.333 align:left position:20% line:83% size:70% but he can't. So then it goes on to my list. 07:51.333 --> 07:56.333 align:left position:10% line:77% size:80% JUDY WOODRUFF: What would you say to someone who's watching this right now and wondering? 07:58.833 --> 08:03.433 align:left position:10% line:71% size:80% FRED CARLSON: They say that normal progression or life span is two to five years after diagnosis, 08:06.800 --> 08:11.800 align:left position:10% line:77% size:80% but that's not true. I have been on this journey for 14 years. ALS is different 08:13.800 --> 08:17.233 align:left position:10% line:77% size:80% for everybody. And take it one day at a time and live life to the fullest. 08:21.100 --> 08:26.100 align:left position:10% line:77% size:80% JUDY WOODRUFF: Which is what Dan Doctoroff plans on doing with his expanding family. 08:27.400 --> 08:31.400 align:left position:10% line:83% size:80% DAN DOCTOROFF: I was diagnosed the same weekend as 08:31.400 --> 08:36.400 align:left position:10% line:83% size:80% my first granddaughter was born. I just revel in her presence. 08:37.833 --> 08:40.266 align:left position:10% line:83% size:80% JUDY WOODRUFF: He now has a second grandchild and 08:40.266 --> 08:43.966 align:left position:10% line:83% size:80% he says he's not thinking about the future anymore. 08:43.966 --> 08:48.966 align:left position:10% line:77% size:80% DAN DOCTOROFF: I'm going to do everything I can to extend my life, even if it's going on 08:51.000 --> 08:56.000 align:left position:10% line:77% size:80% a permanent ventilator, feeding tube, being paralyzed and only being able to communicate 08:58.033 --> 09:03.033 align:left position:10% line:77% size:80% with my eyes. I will take that option, because I want to live. I want to see them grow up. 09:10.700 --> 09:15.700 align:left position:10% line:83% size:80% And I think I can contribute, even as I get sicker. 09:17.066 --> 09:21.100 align:left position:10% line:83% size:80% JUDY WOODRUFF: And squeeze every bit of life that there is. 09:22.633 --> 09:25.566 align:left position:20% line:77% size:70% DAN DOCTOROFF: Totally, every bit of life, and do it day by day. 09:25.566 --> 09:29.200 align:left position:10% line:83% size:80% JUDY WOODRUFF: Days he is savoring more than ever. 09:29.200 --> 09:34.200 align:left position:10% line:83% size:80% For the "PBS NewsHour," I'm Judy Woodruff in New York City.