July 22, 2019
Rahul Desikan, the India born neuroscientist, widely renowned for his
work in the field of neurodegenerative diseases, has passed away at the age
of 41. Dr Desikan was battling amyotrophic lateral sclerosis (ALS) for many
years.
Until less than a month ago, Rahul Desikan was active on
social media about a range of subjects close to his heart like music,
politics, among others.
A scientist specialising in neurologic diseases, Dr Desikan was diagnosed
with amyotrophic lateral sclerosis (ALS), when he was in the
midst of studying the condition that finally ended his life at the age of 41.
In his own words from an essay he wrote in April 2019 poignantly titled,
called I have ALS. I wish a polygenic analysis had told me it was
coming, he talked about the circumstances of finding out he had the
condition.
I was working on the foundations of a polygenic score for ALS when I
noticed one of my arms becoming weaker. Then my voice changed and
swallowing became hard and, well, a well, a fatal diagnosis emerged. I ran
a polygenic analysis on my own DNA and learned that I carry several common
ALS genes that also involve the immune system… Two years ago, had I been
given even a tiny hint my genes were tipping the scale for the development
of a disease that would lock me into my body, unable to move or breath
normally on my own, I would have been sad, and probably mad. But then I
would have packed more hours into developing genetic analyses to help
people solve diseases like ALS. So now I’m running as fast as I can —
from my wheelchair. – Dr Rahul Desikan, Late
neuroscientist
Even after losing his ability to speak, Dr Desikan continued to write and
publish about living with ALS. In a press release earlier this year, he said
“I went into medicine to take care of patients with brain diseases. Now, I
have one of the diseases that I study.. Even with this lethal disease, I
continue to find neurology fascinating and beautiful.”
Born in India, Dr Desikan grew up in New York City. During his time in
medical school, he and his colleagues developed the Desikan
Atlas, a widely used method of automatically labelling regions of the
human cortex based on MRI data.
In a memorial, his colleague Christopher Hess said the
Desikan Atlas “quickly became one of the most widely-used tools in the
neuroscience community, has been cited more than 4500 times,”
In 2016, when Desikan’s team had just begun the largest study of ALS
genetics to date, he began to experience the symptoms of ALS. Several months
later he was diagnosed with the fatal disease.
