Rahul Desikan, MD, PhD Investigates the Science and Experience of ALS

Even as Rahul Desikan, MD, PhD battles amyotrophic lateral sclerosis (ALS) himself, he continues the rigorous lines of questioning that led him to become a leading investigator focused on neurogenerative diseases. His search for answers is both urgent and extremely personal, as he explains in two recent articles.

One of the questions Dr. Desikan is asking, as he details in an opinion piece for STAT News, is this: "Would you want a fortune teller to reveal your risk of developing something that might short-circuit the life you are living possibly years from now?" With polygenic analysis (a "cocktail of genetics, high-end statistics, and advanced computer models, with a twist of epidemiology"), Dr. Desikan says "such 'fortunes' can be told" by "measuring the effects of myriad genes for a particular disease and distilling them into the risk of that disease."

He believes that polygenic analyses, which are becoming available commercially, can be useful for many individuals who want to understand their risk for a number of conditions "from Alzheimer's and heart disease to schizophrenia and lung cancer." What would such knowledge make possible? Although he calls the current risk scores generated by the analyses "blunt instruments," Dr. Desikan says they give people a chance for "healthy changes in behavior and lifestyle or therapeutic interventions that can prevent or modify the trajectory of disease." But that's not all: the scores may offer individuals opportunities to live their professional and personal lives differently.

Dr. Desikan is candid about the incredible irony in his own diagnosis: "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." Although he expresses disappointment that modern medicine hasn't yet been able to "solve ALS," Dr. Desikan's instinct is to continue to focus his investigations into the causes of neurodegenerative diseases, continuing his research and awareness-raising activities. He says that "Genetic analyses can help people solve diseases like ALS."

Since receiving his ALS diagnosis in 2017 and even after losing his ability to speak, Dr. Desikan has continued to write and publish. He had perspective piece on April 28 in the Washington Post. He has authored or co-authored over 20 papers, and additional op-eds in the Washington Post and the San Francisco Chronicle. His story and research have also been highlighted in the Washington Post and Bostonia magazine and on Good Morning America.

To support Dr. Desikan and the team at the UCSF Laboratory for Precision Neuroimaging, please visit this UCSF crowdfunding site to make a donation.

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