My next chapter: Fighting ALS. A personal health update from Sidewalk… | by Daniel L. Doctoroff | Sidewalk Talk | Dec, 2021

Daniel L. Doctoroff

In 2002, my dad, Martin Doctoroff, died of ALS. At the time, we thought it was a tragic fluke, as is the case with the vast majority of ALS patients. But when his brother, Mike, was diagnosed in 2008, it was clear the disease wasn’t random. Ever since then, my family has been living with a spectre that was always vaguely present. Now, unfortunately, it appears very likely that I have ALS, too.

I would like to share a little background on my situation and the impact on me and on my company, Sidewalk Labs.

The quick backstory starts with some hip weakness that started about two years ago and has gotten slowly, but progressively, worse. And when my wife Alisa and I were in Iceland before Labor Day, I had some other hip and isolated breathing issues that led me to see a doctor when I got back. That started an eight-week odyssey that has taken me to three leading ALS specialists — at Hospital for Special Surgery and Columbia in New York, and Johns Hopkins in Baltimore.

There is no single diagnostic test for ALS. Instead, the doctors look for patterns and seek to eliminate alternatives. I have had dozens of blood, physical, and other tests. The conclusion after all of that is that the symptoms and several of the test results indicate the odds of my having ALS are very high.

One reason the odds are not even higher is the genetics. In my family a specific genetic mutation has been identified that causes ALS. I have tested negative for that mutation, nor do I have any other mutation currently associated with ALS. It’s possible that there is a second, unidentified gene in my family, that I have a non-genetic case (about 90 percent of cases are non-genetic), or that I have symptoms that mimic ALS but are not ALS.

While we continue to look for alternatives and hunt for a genetic cause, my doctors have started me on a cocktail of drugs that, hopefully, will slow the progression of the disease down a bit. A big part of what I will be doing now is waiting to see if I deteriorate over time. Anyone who knows me knows patience is not my finest virtue.

There is some encouraging news: If it is ALS, it appears that I have caught this early. I haven’t really experienced any real change in my daily life. No one would have gone to be evaluated at this point if not for my family history. And if my hip is the leading indicator, it has been progressing slowly.

This is all very new. But given the likelihood that my lifespan will be significantly shorter than I thought, I know there are changes I need to make in my life now. Telling my kids and their partners was devastating (especially given the presence of our month-old granddaughter, Lila), but we also rallied around each other with all of the love and support a guy could ever hope for.

I want to spend less time achieving things and more time with them, always being present for a change. I want to spend as much time babysitting my granddaughter as her parents will allow. I want to finally learn to speak French fluently. I want to read much more, just for pleasure. I am looking forward to reconnecting with friends and going on adventures with Alisa while I still can.

One unfortunate result of this is that I’ve decided I have to step down from my role as CEO of Sidewalk Labs.

Six years ago, I launched Sidewalk Labs within Google, before it joined the Alphabet group of companies. I couldn’t be more proud of what Sidewalk Labs has achieved. We have brought together a unique and remarkably talented group of urbanists and technologists, and we built a diverse and inclusive culture where we learned to work together across boundaries to create a bold and unprecedented vision for cities to use technology thoughtfully to radically improve quality of life for all. Out of our work in placemaking, we created and spun out a groundbreaking new business, Cityblock Health, that is reinventing health care for underserved communities with unique needs not being met by our siloed healthcare system; a company that is reimagining transportation planning (Replica); and a company that has pioneered new forms of tech-enabled infrastructure (Sidewalk Infrastructure Partners).

Our comprehensive vision for Toronto provided a global blueprint for climate-positive development. Several of the ideas that we developed during our work in Toronto have become products and applications that offer enormous opportunities to address sustainability in cities, including Pebble (smart mobility), Mesa (building energy), Delve (development planning), Affordable Electrification (home energy), and Canopy Buildings (factory-automated mass timber construction).

In the past year, we’ve been exploring many options to scale these sustainability products even faster, including external fundraising. At the same time, while sustainability and social impact have been very important to Google since its founding, over the past few years Alphabet has also been increasing its focus in this area and doubling down on its climate-related commitments, including its ambitious goal to operate on carbon-free energy 24/7 by 2030 and invest in technologies to help partners and people all over the world make sustainable choices. Now is the right time to combine forces.

Starting next year, Sidewalk products Pebble, Mesa, Delve, and Affordable Electrification will join Google, becoming core to Google’s urban sustainability product efforts. These products will continue to be led by Sidewalk Labs President of Urban Products Prem Ramaswami and Chief Technology Officer Craig Nevill-Manning, both Google alumni, and the teams will continue to execute on their vision and serve customers. Separately, recognizing the importance of more sustainable construction approaches, Alphabet will assist Canopy Buildings in becoming an independent company.

I leave Sidewalk having complete confidence that our impact will increase exponentially. While I will dearly miss working with the incomparable Sidewalk Labs team, I couldn’t be more excited to see Google accelerate the development of our products and technology to achieve their sustainability mission — not a moment too soon for the world.

Despite wanting to focus more on enjoying life, there is still one thing I want to achieve. I want to spend the rest of my life, whatever that is, working toward ensuring that no one dies from ALS.

After my Uncle Mike died, I decided I had to do something. There had been little progress on the disease since it was discovered 140 years before he died. As a result, in 2010 I started an organization that later became Target ALS, pioneering a new, collaborative approach to ALS research.

We fund research by cross-disciplinary and cross-sectoral teams to discover promising approaches that we hope can accelerate progress into clinical trials. We also fund research tools that lower the barriers to entry for researchers.

The progress that has been made by Target ALS and others is drawing a wave of interest from industry. At our first annual meeting eight years ago, there were only six companies in attendance. At our last annual meeting, there were 94 biotech, pharmaceutical, or venture capital firms in attendance. To date, we have raised $90 million — and the research we have funded has led to six clinical trials, and 60 percent of the 40 or so consortia that we have funded have led to continuing drug discovery programs. This is a disease we can conquer with enough resources and collaboration.

I’m going to use my relationships, fundraising capacity, and the community and competencies that we have created at Target ALS to raise an additional $250 million. We are going to dramatically increase investment in this disease at a critical moment in time so that, hopefully, we will yield such progress that within 10 years we will be in sight of our goal of no one dying of ALS.

I have always been an optimist and I have always believed in the power of optimism. This moment is no different.

The other day, I was speaking with a friend who was given a 17 percent chance of survival when she was diagnosed with cancer. The best advice she got was to “fuck the odds.” Seventeen years later, she’s thriving.

That’s what I intend to do for myself, my family, and everyone who suffers from this horrible disease.

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