I saw Dan Doctoroff, former deputy mayor of New York City, CEO of Bloomberg, and Sidewalk Labs (the division of Google devoted to finding private sector solutions to urban problems). Late last year, Dan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) which is a disease of the motor neurons, which send signals to the muscles to move. In ALS, the motor neurons die and patients become progressively paralyzed. A person lives an average of four years after diagnosis.
Edelman worked closely with Dan in the early days of the Bloomberg Administration on a web site for Lower Manhattan. Our site, developed in the two months before the first anniversary of 9/11, was critical to the recovery of the area, showing restaurants and cultural activities, giving updates on construction plans and scientific reports on health and safety. Dan was ambitious, visionary, and decisive, pushing the Edelman team (Justin Blake, Russ Dubner and me) to do the best work of our lives because the neighborhood depended on it. He founded New York City’s bid for the 2012 Olympics, which was a catalyst to change across the city, including The High Line, Hudson Yards, the regeneration of the Brooklyn and Queens waterfronts, and the Barclays Center, Citifield, and new Yankees Stadium, among many others. With Mayor Bloomberg, he led the remarkable resurgence of New York after 9/11.
Dan is now in another fight which he is determined to win; to find treatments for ALS. Here are the key statistics on ALS. One in 400 people alive today will die of ALS. Ninety percent of cases are non-hereditary. It affects men slightly more often than women (55 percent to 45 percent). The mean age of onset of the disease is around 60, although people can get it in their 20s and 30s (baseball star Lou Gehrig died in his late-30s). Six thousand people died of ALS in the U.S. last year.
Dan's dad and uncle died of ALS and when his uncle died in 2010, Dan decided that he had to do something. He created a new type of research organization called Target ALS, which has played a major role in the dramatic progress toward finding treatments for ALS in the last ten years.
There have been major leaps forward in bringing new talent and technology to the field, in understanding the biology and genetics, and in engaging biotech and pharma. The number of companies involved in Target ALS' research (VCs, Biotech, Pharma) has risen by 15x to 123 in the last decade, with several joining Target ALS' collaborative research consortia. Based on the work funded by Target ALS, six clinical trials are underway, five biotech companies have been launched, and 60 percent of the consortia that it has funded have led to industry drug development programs. Target ALS has joint programs with other organizations to explore connections with Alzheimer's and Fronto-Temporal Degeneration. One of the reasons Target ALS has been so successful is that scientists retain ownership of all intellectual property developed with funds from Target ALS.
When he was diagnosed, Dan committed to raise $250 million to scale up Target ALS in one year. Dan has a mantra, Everyone Lives. To achieve this goal, over the next decade he wants to draw in hundreds of new researchers, develop 200 drug targets using multiple therapeutic approaches and launch 30 clinical trials, plus develop the first biomarker toolkit. Among the plans are helping newly established investigators with under five years of experience to run their own labs and to create clinical ALS fellowships for neurology residents.
I gave him a hug goodbye after lunch. He climbed on his new Vespa to motor uptown, the most positive man I have ever met. I have promised Edelman’s help in this fight. Any others in the PR field who want to join should contact me.
Richard Edelman is CEO.
