Former NYC deputy mayor raises millions for ALS research while facing his own mortality

Geoff Bennett:

Some 30,000 Americans have been diagnosed with ALS, a rare neurodegenerative condition also known as Lou Gehrig's disease.

As researchers work toward a cure, one patient is raising millions for the cause, while he also reckons with his own mortality.

Judy Woodruff reports as part of our series Disability Reframed.

Judy Woodruff:

The High Line in New York represents a rebirth for the city in the 21st century.

Dan Doctoroff, Former New York Deputy Mayor:

The High Line was an abandoned freight line.

Judy Woodruff:

That sat dormant for decades before the city's former deputy mayor, Dan Doctoroff, led a project to transform the area into a six-acre park and green space. It is one of the hundreds of projects across New York that bears Doctoroff's fingerprints, from the Hudson Yards neighborhood, to the new Yankee Stadium, and the World Trade Center.

Dan Doctoroff:

I have always been a pretty good juggler, doing multiple things at the same time.

Michael Bloomberg (I), Former Mayor of New York: He made things possible. He gave people hope.

Judy Woodruff:

Former New York City Mayor Michael Bloomberg says the man he asked to join his team in 2002 transformed parts of the city.

Michael Bloomberg:

Dan was a role model. And one of the great things about Dan is, he shows what's possible, and then the city is big enough to accommodate plenty of people who will then go and try.

Judy Woodruff:

But now Doctoroff faces his most daunting challenge yet: In 2021, he was diagnosed with ALS. Also known as Lou Gehrig's disease, ALS erodes nerve cells in the brain and spinal cord, weakening muscles, until a person can only blink his eyes. There is no cure, with a typical life expectancy between two and five years.

These days, Doctoroff, who he says spent much of his life focusing on what came next, is forced to reckon with the present.

Dan Doctoroff:

I have always been somebody who focuses on the future, so much so that I never really enjoyed anything I achieved, because it was always on to the next thing.

But when I was diagnosed, I stopped thinking about the future a lot. And I really don't think about the course of the disease. I live more day to day.

Judy Woodruff:

How has your daily life changed? The daily routine of your life, how has that changed?

Dan Doctoroff:

I can't do a lot of things that I love to do, like biking, walking, things that require a lot of physical exertion. But I have learned to adapt.

Judy Woodruff:

That adaptation includes an exercise routine to make sure his body can make it through the day, a cough-assist machine to help clear his lungs morning and night, and a regimen of 20 pills a day.

Doctoroff still maintains a busy, albeit scaled-back, schedule. He now rides a Vespa motorbike around his Upper West Side neighborhood to meetings. But most of his effort is focused on Target ALS, his nonprofit raising money for ALS research.

Doctoroff founded the organization in 2013, long before his own diagnosis, but after his father and then his uncle both died of ALS.

Dan Doctoroff:

My most important legacy will be making a contribution to eradicating ALS, because it is so personal. One in 400 people are going to get the disease if we don't find treatments.

Judy Woodruff:

Two years ago, he set a fund-raising goal of $250 million, which at the time of our interview was more than 90 percent complete.

Much of the current cutting-edge research on ALS happens here at Johns Hopkins University in Baltimore at a center run by Dr. Jeffrey Rothstein. Rothstein himself diagnosed Doctoroff and works with hundreds of men and women who have the disease.

Dr. Jeffrey Rothstein, Johns Hopkins University:

ALS patients are America. There's a full range of what I see in my clinic, from top athletes to brilliant attorneys to couch potatoes.

When it comes to this disease, no one's, in a sense, unique. They suffer from a disease that's robbing their ability to move, walk, and breathe and speak.

Judy Woodruff:

ALS, discovered in the late 19th century. Lou Gehrig comes along; 82 years ago, he died of ALS. Since then, how much progress has been made in understanding and treating this disease?

Dr. Jeffrey Rothstein:

An enormous amount of progress in understanding the disease has occurred. We know the different inherited forms of the disease. We know the genes that cause many of the inherited forms. We know a lot about how the gene defects actually lead to injury to the nervous system, the more common sporadic form, which is about 90 percent of ALS.

We also know much about the pathways. That, however, has not been converted into very effective drugs. So, lots of science known, but converting science into drugs is a far greater challenge.

Judy Woodruff:

A challenge Doctoroff's organization, Target ALS, is hoping to bridge.

Dr. Jeffrey Rothstein:

There was no coupling, or no good coupling, between pharma, pharmaceutical companies, and academics. That was what Dan really did in a great way. He brought us together in novel ways, provided unique funding to bring pharma and academics together in collaborative units.

Lora Clawson, Johns Hopkins University:

Could benefit from using speech assist device like Google or Siri.

Judy Woodruff:

Lora Clawson is director of ALS clinical services at Johns Hopkins. The facility offers treatment therapies and therapeutic drugs, among a range of surfaces.

Lora Clawson:

Once the patient is diagnosed, they're referred into the multidisciplinary clinic, where they're evaluated by a multitude of specialists. We also sign them into a database to screen them for any clinical research trials that we have.

Judy Woodruff:

But even clinical trials can only hope to slow progression of ALS.

Lora Clawson:

It's devastating to hear the nature of this disease, the functional living needs that they have. Feeding, dressing, bathing, being able to mount the courage to get out of bed in the morning is difficult.

Judy Woodruff:

A picture of that courage is 80-year-old Fred Carlson. The 30-year Army veteran and former marathon runner was diagnosed with ALS in 2008, but has defied the odds.

Fred Carlson, ALS Patient:

It's rough. And you have to adjust your whole life to everything. Like, I'm in a wheelchair all the time now. And the only relief I get is maybe transferring to a recliner.

Being confined to a wheelchair is tough, but I look on the positive side and try to enjoy life as much as I can.

Judy Woodruff:

Carlson gives credit to others, including his service dog, Marley, but especially his wife of 52 years, Mary Jo.

Fred Carlson:

I have to rely on her quite a bit.

Mary Jo Carlson, Wife of Fred Carlson: Which, after 52 years of marriage, is hard. It's hard for Fred that he has to rely on me to do everything.

And I think there are times where he sees things to be done and he wants to do them, but he can't. So then it goes on to my list.

Judy Woodruff:

What would you say to someone who's watching this right now and wondering?

Fred Carlson:

They say that normal progression or life span is two to five years after diagnosis, but that's not true. I have been on this journey for 14 years. ALS is different for everybody. And take it one day at a time and live life to the fullest.

Judy Woodruff:

Which is what Dan Doctoroff plans on doing with his expanding family.

Dan Doctoroff:

I was diagnosed the same weekend as my first granddaughter was born. I just revel in her presence.

Judy Woodruff:

He now has a second grandchild and he says he's not thinking about the future anymore.

Dan Doctoroff:

I'm going to do everything I can to extend my life, even if it's going on a permanent ventilator, feeding tube, being paralyzed and only being able to communicate with my eyes. I will take that option, because I want to live. I want to see them grow up.

And I think I can contribute, even as I get sicker.

Judy Woodruff:

And squeeze every bit of life that there is.

Dan Doctoroff:

Totally, every bit of life, and do it day by day.

Judy Woodruff:

Days he is savoring more than ever.

For the "PBS NewsHour," I'm Judy Woodruff in New York City.