Why Michael Bloomberg's Former Deputy Mayor is Raising $250 Million for ALS Research (Exclusive)
- Oops!Something went wrong.Please try again later.
Daniel Doctoroff founded Target ALS in 2013 after his father and uncle died from the disease. Now he has it too — and has pledged to raise a quarter of a billion dollars in the search for a cure
Scott Olson/Getty
Daniel Doctoroff, the former deputy mayor of development for Michael Bloomberg between 2002-2008, is all too familiar with ALS, or Lou Gherig's disease.
"It's a devastating diagnosis," Doctoroff, 65, tells PEOPLE of the incurable disease that recently took the life of Sandra Bullock's partner Bryan Randall.
Doctoroff would know. First his father died from complications of ALS in 2002, and then his uncle died from it in 2010. After his uncle's death, Doctoroff decided to to launch the medical research foundation Target ALS in 2013, with the goal of raising as much money as possible towards funding clinical trials and medications, and hopefully even a cure.
He was, after all, a man who was used to getting things done. During his tenure as deputy mayor in New York, he'd overseen the construction of beloved public space projects like Brooklyn Bridge Park, the High Line, and Hudson Yards.
But then in 2021, Doctoroff himself was diagnosed with ALS, despite not having the same genetic mutation that his father and uncle had. "Only 10% of cases are from the genetic mutation," he explains. "The other 90% of cases are sporadic ALS. So maybe there's a secondary gene we don't know about yet, or maybe I also have sporadic ALS."
That's when he decided to up the game, and announced that Target ALS had a new goal of raising $250 million towards ALS research.
"Nobody had ever set a goal to raise that much money for ALS before," he says of his ambitious goals. He's already almost there.
To date, the foundation has raised $220 million, and Doctoroff's own diagnosis isn't slowing him down one bit when it comes to fundraising. "I've been coming along much better than I would have expected at this point in my journey," he says. "In the beginning, I lost a lot of my respiratory function but it's better now. It's progressing, but pretty slowly."
Amyotrophic lateral sclerosis, also known as motor neuron disease or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles — which means while your brain and mind still function as normal, your body is slowly paralyzed, leading to the inability to move, speak, swallow, and even breathe on your own.
"The lifetime diagnosis for ALS is about one in 400 people," Doctoroff says of the disease's staggering statistics, Still, Doctoroff has remained optimistic about the research and new technologies he's seen over the past decade.
"In the last ten years there's really been an explosion of progress, and we're even starting to see reversals of symptoms in genetic cases for the first time ever," he says.
"But there's also a pipeline of clinical trials in the works, and other drug discovery programs that will hopefully lead to more clinical trials. We're just really just seeing a lot of collaboration among the four corners of ALS research, which is academia, the drug industry, ALS non-profits, and government," he says.
As for why the disease is garnering attention now, Doctoroff says a lot of it has to do with new researchers entering the field with an interest in it — and of course, the pharmaceutical industry being on board with developing profitable drugs. "The level of interest among the industry has really skyrocketed," Doctoroff says, noting that ALS research is not dissimilar to diseases like Alzheimer's, Parkinson's and MS.
"At the end of the day, the more money you have, the more tech you have and all of that drives in more researchers. More researchers and research means you will make progress."
Related: Roberta Flack Has ALS, Making It 'Impossible to Sing'
As for his own experience with ALS, Doctoroff says he's remaining positive, thanks to both his own outlook on life, and the support his family has shown him.
"My family has rallied in ways you can only dream of," he says. "My wife has been incredibly resilient, and my kids have turned the dial up on their attentiveness and responsiveness. We're all in this together."
He notes that ALS is extremely difficult on families and loved ones. "It's incredibly hard because of the expense and stress," he says. "This is a horrible disease, and you just have to watch the patient get worse and worse. But having that family and friend support is just critical." He adds, "I've been in a good mood since my diagnosis, but mainly because of how my friends and family have shown their support."
He adds, "I can also live every day and and not think too much about the future," he says. "I was never that way before. I was always so future focused that I never enjoyed the present because I was always busy planning the next thing." He adds, "I've changed, Which is very unusual!"
To donate to Target ALS, visit https://www.targetals.org/
To donate to the ALS association, visit https://donate.als.org/
For more People news, make sure to sign up for our newsletter!
Read the original article on People.
