The following is a conversation between Dan Doctoroff, Founder and Chairman of Target ALS, and Denver Frederick, the Host of The Business of Giving.
Denver: Dan Doctoroff has left an indelible mark on the landscape of New York City with a host of transformative urban projects. His illustrious career spans from Wall Street to public service, and now he’s channeling his energy towards a deeply personal mission, the fight against ALS through his initiative, Target ALS.
Beyond his professional accomplishments, Dan’s resilience and optimism in the face of his personal challenges with this terrible disease inspires so many.
Dan, thank you for joining us today to share your journey and insights.
Dan: It’s great to see you again, Denver. It’s been 25 years since we’ve talked, and so it’s really great. Just seeing you brings back great memories.
Denver: Likewise here, it’s a real treat. You were only diagnosed with ALS a couple years ago, but this disease has been a significant part of your life for more than two decades, correct?
Dan: Yeah, my dad died of ALS in 2002, and my uncle died in 2010. And so I’ve been living now with the pain of those deaths. By the way, my college roommate died of ALS…
Dan: …in 2018. So not just with the pain of these people who are incredibly close to me, but also with the specter that it can infect me, my cousins, my brothers, and potentially my children.
Denver: No one’s ever fully prepared for a diagnosis like you received, but were you kind of prepared, I guess?
Dan: No, I’m an optimist. And so I was convinced I would never get ALS. And by the way, what’s really weird about it is my father, my uncle, and actually their first cousin, all had the same genetic mutation that causes ALS, and I don’t have it. And so it means maybe another gene that hasn’t been discovered… or maybe it’s random, which is so weird. But you deal with it.
“ALS is the disease of the motor neurons, and the motor neurons are special cells in the brain and the spinal cord that send signals to the muscles to move. And in ALS, whether for genetic reasons or biological reasons, those motor neurons die. When the motor neurons die, you can’t move your muscles. And most people only survive three to five years with the disease.”
Denver: Deal with it. I should probably take a moment here and ask you to explain to listeners: What is ALS, and what happens to a person?
Dan: So yeah, ALS is the disease of the motor neurons, and the motor neurons are special cells in the brain and the spinal cord that send signals to the muscles to move. And in ALS, whether for genetic reasons or biological reasons, those motor neurons die.
When the motor neurons die, you can’t move your muscles. And most people only survive three to five years with the disease. I’ve been… two, as you pointed out, and I’m doing much better than I thought I would be at this point. But the way you ultimately die is your respiratory system… the respiratory muscles fail, and that’s how people die from the disease.
Denver: The breathing.
Dan: So you get increasingly paralyzed and die from respiratory failure.
Denver: Dan, ALS was first identified or described back in 1870. But when you started Target ALS, nothing, and I mean nothing, had been done in 140 years as far as research. What were some of the reasons for that?
Dan: Well, there were some things that had been done; some genes had been discovered, some biological processes, but you’re generally correct that there had been very little progress. So after my uncle died, I brought together a small team of scientists who were leaders in ALS or other neurodegenerative diseases to develop hypotheses about why there’d been so little progress.
And they actually developed six different hypotheses. Three of them were about the nature of funding ALS. There was very little translational research. The research was siloed. It tended to be incestuous, so leaders in the field tended to give other leaders in the field money, grants, and that kept the number of researchers very small.
But there were other issues as well. The barriers to entry, to getting into the field for scientists, were very high because they couldn’t access basic tools and resources that they needed to do research. There was almost no involvement on the part of industry, biotech, pharma, and venture capital. And then there were all sorts of IP issues, that slowed… intellectual property issues… that slowed things down.
So what we decided to do in creating Target ALS was correct for all of those flaws. And what we do is we fund consortia of researchers, often led by industry, that are multidisciplinary because this is a complicated disease, and we’ve had remarkable success with that strategy. So you’ll see four or five different disciplines, often led by a researcher from biotech or pharma.
And of the 59 consortia that we funded, prior to this year, 60% of them have led to drug discovery programs on the part of pharma or biotech. Six clinical trials have been launched already as a result of that research. And five biotech companies have been formed. We also provide those tools and resources for free to anyone in the world.
And those tools and resources, things like stem cells and animal models and tissue samples and the like, have now been used on 1,100 projects around the world. So again, accelerating the process of discovery. We get industry involved in everything we do. They’re on our board, on our independent review committee. They are the advisors, but they also participate in those consortia.
We have seen an explosion in interest by industry. I’ll just give you one example. When we had our first annual meeting in 2013, eight companies showed up; at our most recent annual meeting in May of 2023, 138 companies showed up. And that just indicates that they believe, the companies believe, that this is a disease that can be conquered, and candidly, they can make money from it.
We also partner with other diseases because there’s a lot of overlap between ALS and other neurodegenerative diseases, like Alzheimer’s, Parkinson’s, Huntington’s, FTD, which is what Bruce Willis was just diagnosed with. And so we partner with other diseases so we can learn, they can learn, and we can also draw in new investigators.
Denver: A definitely innovative ecosystem you have created, and it’s truly inspiring. Let me unpack a little bit of that. Let’s talk about industry. As you said, there was no pharma, biotech, or venture capital involved in this space. Then you got a handful of them, eight. Now you’ve got 138, and probably since Boston, you’ve got even more.
How did you change that paradigm? How do you get from zero to 138? What was the trigger that got companies and industry to look at this from a different lens, a different perspective?
Dan: Well, I think the big part of it was there’s been, over the last 10 years– and obviously not all that catalyzed by Target ALS– but there’s been amazing progress in understanding the genetics and the biology of disease. There’s also been really significant progress in terms of treatment modalities. For the first time ever, patient symptoms have been reversed in an ALS patient.
Now it’s a very narrow approach… with a couple of specific genetic mutations. And there’s an approach that basically attaches something to the RNA that alters the impact of the genetic mutation. But it stuck, and so people are really encouraged; companies are really encouraged that this is a tractable disease. That it ultimately can be conquered, and that’s bringing new people in the field.
I will say at Target ALS, because we also have placed a major focus on involving industry in everything we do, I think that’s helped as well.
Denver: Yeah, yeah. You don’t usually see industry leading these consortiums. You always have the academics up front, and the idea that you’ve been able to put them on even turf is remarkable.
Dan: Yeah, and the level of collaboration in this field has been exploded over the last 10 years. And it’s academics, it’s industry, it’s other ALS nonprofits, where we’ve worked together, I think, really well. And now increasingly, it’s the federal government.
Dan: The NIH and the Foundation for NIH have really accelerated their engagement in this disease as well. So we’ve got these four corners that are necessary, all working together in a way that they didn’t 10 years ago.
“…what’s really important in ALS research is a biomarker or a set of biomarkers. A biomarker is something that indicates the presence of the disease and the progression of the disease. It’s really important because you can diagnose people earlier, and the earlier you can diagnose people over time, the more effective the treatments will become.”
Denver: And I would add to that, if I may, Target ALS, that you are more or less an egoless organization, and that essentially you’ve been able to become a convener because people understand you’re looking to solve the problem. You’re not looking to get credit.
Dan: Yeah, we don’t care about credit. So an example of that is: what’s really important in ALS research is a biomarker or a set of biomarkers. A biomarker is something that indicates the presence of the disease and the progression of the disease. It’s really important because you can diagnose people earlier, and the earlier you can diagnose people over time, the more effective the treatments will become.
But also, it’s important for the precision of evaluating clinical trials. So the search for a biomarker is really critical. And what we did is we brought together 10 academic labs, 14 companies, six ALS nonprofits, and two venture capital firms for the first ever industry-wide initiative to find biomarkers. And when you don’t have an ego, that’s much more possible.
Denver: Absolutely. Dan, often I think the best insights about a sector come from people who are not steeped in it. And although you have been very philanthropically oriented through your entire life, you have not really been in the inner workings of nonprofits and the research community. Were there any things in particular that surprised you when you got deep into this work?
Dan: Well, the big thing was how little collaboration there was. And with a complex disease, you need people to be working together. And as I said, it’s those four corners– academics, industry, the other ALS nonprofits– and by the way, related disease organizations– and federal government.
And one of the things that we are really proud of is how that paradigm of collaboration has really shifted over the last 10 years. And we think we’ve played a significant role in that happening.
Denver: And it’s created an awful lot of hope, particularly for people in the ALS community, I’m sure.
Denver: Part of it, too. They help propel you forward.
Dan: Yeah. And look, we haven’t really treated… had people live longer, a little bit longer, but we’re getting there. And I think there is a lot of hope. I’m not sure it will be in time for me and the vast majority of ALS patients. But one in 400 people will die of ALS. And my goal is to play a significant role in making sure that everybody with ALS can live a full life. And we’re on path to do that.
Denver: Yeah, one in 400 people is an awful lot. I mean, you just take a stadium, like Texas stadium… got 100,000 people, and you’re looking at a couple hundred people in that stadium, a few busloads, who are going to die of ALS. And when you start to look at it in that perspective, it’s a rare disease, but not that rare.
Dan: In my college class of 1,600… I graduated in 1980 from Harvard. So far, two of our classmates… as I mentioned my roommate was one, have died. I’m the third one to be diagnosed. The average age of onset for ALS is about 60. So presumably, another one or another two might be diagnosed with ALS because it’s a bell curve around 60. And so that’s a perfect example of one in 400.
Denver: Yeah, yeah. That really is. Talk a little bit about your fundraising. You set out to raise a couple hundred million bucks, and you’re well on your way to doing that. Now, that’s not that easy. I don’t think that kind of money has ever come into the ALS community, outside maybe the ice bucket challenge, which was a bit of an outlier. How have you been able to do that?
Dan: So it’s helpful to have a lot of friends who are very charitable and have a lot of money. So when I was diagnosed, I decided to step back from a lot of the other things I was doing and dedicate my life to making sure everyone lives… can live with ALS. And I almost immediately went to our CEO, who’s led our organization for 10 years, named Manish Raisinghani… and done it brilliantly. And I said, “All right, we’re going to scale this organization up.”
We already raised like $90 million over the previous 10 years, and so we developed a strategic plan that builds on the successes that we’ve had, and corrected some of the flaws that we had over the first 10 years, and it was a seven-pillar strategy. And so within about six months, we were ready to go out and raise money.
And given the success that we’ve had over the previous 10 years, and given my relationships… I’ve really gone to people that I know, and I think they have been persuaded by the success and the strategy for Target ALS moving forward. And so I set a goal based on our needs of $250 million, started in May of 2022, and we’re 16 months later, and I’ve raised $229.
Dan: So I hope to get done by the end of the year.
“I think at the end of the day, picking great people is the key to everything… and making sure that they work together. At the other end of the spectrum is: you’ve got to have a strategy.”
Denver: That’s wonderful. I know how persuasive you can be just having watched you at the Olympics. You can make a case for something, and that’s for certain.
Let me talk a little bit more about that organization, Target ALS. Wherever you’ve been, Dan, you’ve always had great teams, the Olympics, City Hall, Bloomberg, and now Target ALS. I mean, in addition to getting the right people, what’s the key to building a great team?
Dan: Oh, I think first of all, I’m a total believer in collaboration. And so, yes, you want people to be motivated, passionate about the cause, but you don’t want them to be political. And so I think over the course of my career, I’m pretty good at spotting people who are excessively political. So we want really smart, motivated, passionate people who are going to join together in a common cause, and ultimately be multidisciplinary as well.
And so I think at the end of the day, picking great people is the key to everything… and making sure that they work together. At the other end of the spectrum is: you’ve got to have a strategy. I mentioned before that before we even formed Target ALS, we developed hypotheses about why there’d been so little progress.
And we built the organization around correcting those hypotheses, so we had a clear direction. And obviously, we’ve learned things along the way and modified our approach, and are continuing to do that as we move forward. I think people and strategy and clarity of direction are really critical.
Denver: Yeah, yeah. And I think in terms of the people, it’s just not the aptitude, it sounds like it’s the attitude as well. We’re not looking for political agendas, but people who want to be part of a team and solve a problem.
Denver: Yeah, yeah. Let me turn to you a little bit. Have there been any notable mindset changes or personality changes that have occurred in you since you received your diagnosis?
Dan: Totally. And you know this, having worked with me a long time ago. I was always so future-focused. I never enjoyed anything I accomplished because I was always on to the next thing. When I was diagnosed, some things flipped in my brain. It was subconscious. I think it is my optimistic nature protecting me, but I really don’t… other than Target ALS… think much about the future.
Denver: That’s incredible.
Dan: I try and live every day to its fullest, not thinking about the course of the disease. I’ll give you an example of that. While I was being diagnosed, my son and daughter-in-law were pregnant with our first grandchild. And now I know the statistics. And the assumption was I wouldn’t live to see my granddaughter turn five. 80% of ALS patients die within five years, and that would really kind of bum me out.
Denver: Yeah. yeah. Sure.
Dan: When I was diagnosed, I stopped thinking that way. And I just revel in her presence, in her development. I never think about the future with respect to her and with most things. I just changed.
Denver: Yeah, yeah, well.
Dan: And by the way, that has made me more patient. I’m not competitive anymore.
Denver: Oh my gosh! You are probably more present, too, aren’t you?
Dan: I’m definitely more present. To be honest, I’m probably a little nicer than I was. I was always nice, but I could be sometimes explosive.
Denver: You were driven…
Dan: I’m just not that way anymore.
Denver: Yeah, yeah.
Denver: You were a driven person, a very driven person. And it wasn’t being unnice, it was that you just were so focused on the goal that you were going to get there.
Dan: Right. That’s totally true.
Denver: It also seems like this new perspective is that you tend to worry about things that you can control, but things you can’t control– like how long you’re going to live to see your granddaughter– they don’t enter your mind because there’s nothing you can do about it. So you just focus on what you can control right now.
Dan: Well, overall, by the way, I just worry a lot less. I’ve been incredibly happy since I was diagnosed. I really haven’t had a bad day. There have been like three hours when I’ve been down, and those tend to be a bad test result or something I couldn’t do today that I could do yesterday, family celebrations…
Denver: Yeah, yeah.
Dan: …tend to puncture the veil of happiness. But I bounce back every time within like 15 minutes, and I move beyond it.
And there’s a lot of reasons why I think I’m happy. Living in the present is one, but I’ve received so much love and support from so many people. I’m grateful for the life I’ve had. I’ve been married to my wife, Alisa, for 42 years. We met freshman year in college. We had three great kids, who I’m incredibly proud of. I’ve done career-wise and extra-curricularly what I wanted to do. I think I’ve had an impact, so I’m grateful for the life I’ve had.
And then as you change… and you’re changing all the time with this disease, those changes can make you get down. Or you can say, “You know what? I’m just going to deal with it, and I’m going to adapt.”
Dan: I’m going to figure out a way to make my life easier, and I really enjoy the challenge of adaptation.
And then the last thing that’s made me happy is I’ve got purpose. When you are in this kind of situation where you’re facing a fatal illness, you realize that the only things that really matter are relationships and having a purpose that you care about, and I’ve got those. So…
Denver: True, in spades. Yeah. Do you feel your sense of purpose is different than you’ve had before? I mean, aside from your own personal situation, what you’re doing for this community, as wonderful as the Olympics and Bloomberg and all those were, this is almost a completely different level of purpose in terms of this work. It’s extraordinary.
Dan: Well, it is saving lives.
Dan: It is very different, but it’s not just saving lives. It’s because this disease is so personal… because it’s in my family, it just accentuates the importance of that purpose.
Denver: Got it. Dan, there’s significant news involving you and Target ALS around this year’s New York City Marathon. Share that with us.
Dan: Well, no, I’m being honored by the New York Road Runners Club at their gala, which is I think two nights before the…
Denver: Yeah, November 3rd, I believe.
Dan: November 3rd. And the reason I’m being honored is because back in 2005, I worked with the executives of the New York Road Runners club to create the half-marathon when I was deputy mayor of New York.
And by the way, I think the marathon in New York is the greatest day of the year because it brings everybody together.
Denver: I concur. It absolutely is a wonderful, wonderful, inspirational day.
Dan: Best day of the year.
Denver: I think I read once it was the largest spectator sporting event in the world. Two million people along the route.
Dan: I didn’t know that, but it’s not surprising to me. Anyway, so I’m being honored. And there’s a bunch of runners that are running for Target ALS, which is hopefully the start of a bigger effort in the future.
Denver: Fantastic. Dan, tell listeners about your website, the kind of information they’ll find there, and what they can do to become involved if they should be so inclined.
Dan: Well, the website is www. targetals.org. The best thing that people can do is give money, and any gift is appreciated. If you know someone who’s been affected by ALS, particularly a family member, we are making progress in solving this disease.
So far, we’ve sort of raised money from, as I did mention, my friends. But we are going to expand out and have a much broader effort, and we’re figuring that out now. So there may be ways of getting people involved as we move into the future. We’re hiring a chief development officer. We’ve hired a marketing communications director, which we really didn’t have before because I was just doing it.
Dan: And yeah, I don’t know how much longer I’m going to be around. I’m doing much better than I thought I would be at this stage– two years in. But for the organization to be longer term sustainable, we’re going to have to go beyond, my friend. So we will have a much broader organization and a lot of different activities, but we’re still working that out.
Denver: Yeah, yeah. A legacy, as this moves forward. Well, you are an incredible inspiration to us all, and I think that will be part of the groundswell. Dan Doctoroff, the founder of Target ALS, I want to thank you so much for being here today. It was really great to see you again, Dan.
Dan: Totally, I feel exactly the same, Denver.
Denver Frederick, Host of The Business of Giving serves as a Trusted Advisor and Executive Coach to Nonprofit Leaders. His Book, The Business of Giving: New Best Practices for Nonprofit and Philanthropic Leaders in an Uncertain World, is available now on Amazon and Barnes & Noble.