If the world is to ever find a cure for ALS, then maybe it began the day Amsterdam’s Garmt van Soest learned he had the neurodegenerative disease. Garmt, an enterprise architect and application strategy senior manager with Accenture, was told in August 2013 he had ALS. “It was a pretty bad diagnosis to get, but I wasn’t going to take it lying down,” Garmt said. While ALS may have slowed Garmt’s speech and motor functions, it has had the opposite effect on his mind, mission and ability to rally friends, colleagues and Accenture leadership toward a cure for ALS. In fact, his work toward a cure is now his work for Accenture.
Garmt’s book “ALS DAN TOCH” (“EVEN WITH ALS”), published in September 2015, chronicles his personal fight against the disease in a humorous and inspiring collection of observations and blog posts. The book, originally available only in Danish is now available in English, as an exclusive gift for the New Amsterdam City Swim participants.
Follow Garmt van Soest’s Blog, “Garmt is experiencing ALS – so you don’t have to!”
Accenture Colleagues Join Garmt van Soest in Finding and Funding a Cure for ALS
It wasn’t long before Garmt made an impactful decision on how he would combat the fatal disease. As a matter of course, taking action in cooperation with his friends and colleagues in the Netherlands was a manifestation of Accenture on its best day.
Considering the reputation for scope and complexity of client engagements Accenture takes on, finding a solution to accelerate a cure for ALS seemed achievable to Garmt. He and Netherlands leadership quickly shifted into project mode. This wasn’t just Garmt’s disease to battle alone; they were all thinking big in their quest for a cure.
Garmt and his colleagues, including two other ALS patients with backgrounds in entrepreneurship and two biotechnology industry experts, targeted the global investment/venture capital community to fund drug development that can generate up to US$15 billion in returns. They collaborated on a strategy for an ALS investment fund, built a business case and operating model and wrote their “elevator” pitch.
Fighting ALS on Multiple Fronts
As a result of his own ALS diagnosis, Garmt has added himself to the Project MinE initiative. Project MinE is studying the cause of ALS at the genetic level by mapping and analyzing the entire DNA structure of 15,000 ALS patients—the largest genetic research project in the world today. Project MinE is an initiative of two Dutch ALS patients in collaboration with the Dutch ALS center and ALS foundation.
On another front, Accenture volunteers are working with world renowned ALS researcher Dr. Leonard van den Berg on an initiative to reduce the duration of clinical trials and thereby get ALS medicine faster to market by connecting patients, ALS centers and biotechnology and research firms.
Responding to Garmt’s call for help, Ronald Krabben, client technology executive – Technology, took on the role of leading development of a cloud-based digital platform and marketing initiative, connecting all the dots in terms of accelerating ALS research, funding and mobilization toward finding a cure. The project launched with the help of US$106,000 in seed money from Accenture.