ALS Researcher Living With ALS Continues to Work Toward a Cure

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Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.

Dr. Desikan entered the research and medical field at Boston University in Massachusetts, obtaining both his M.D. and Ph.D. He then completed his diagnostic radiology residency at University of California, San Diego (UCSD) before moving on to University of California, San Francisco (UCSF) for his neuroradiology fellowship.

In the fall of 2016, after years of hard work, he was offered an assistant professorship, along with his own research lab, at UCSF.

Dr. Desikan met his wife, Dr. Maya Vijayaraghavan, in Boston, during her fourth year of medical school. They celebrated their 10th wedding anniversary with their two young sons earlier this year.

“[Maya] is the most amazing person,” he said. “She’s Wonder Woman – a partner, advocate, physician, caregiver, and best friend. She’s everything to me and the only reason I’m alive.”

Dr. Desikan’s passion for understanding the cause of neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease, and ALS, was eminent. His work focuses on using a “big data” approach to explore huge datasets – using novel data mining and statistics to identify a person’s risk for disease.

Soon after his appointment to assistant professor, Dr. Desikan began showing early symptoms of ALS – changes in his voice, muscle twitches in his left arm, and weakness in his fingers. Five months later, at the age of 38, he received his diagnosis at the ALS Treatment and Research Center at UCSF, one of the Association’s Certified Treatment Centers of Excellence.

Dr. Desikan is determined not to let ALS define him.

Research continues to be a bright light in his life. He recently told The Washington Post that research “gives me a reason to live.”

Last month, his work demonstrating a selective genetic overlap between ALS and frontotemporal dementia (FTD) was published in JAMA Neurology. He and his colleagues used a big data approach to uncover two new ALS risk factor genes, BNIP1 and MAPT H1, which represent new ALS therapeutic targets.

Those same colleagues and others – including people early in their careers and established faculty – regularly visit Dr. Desikan’s home to discuss and troubleshoot their ideas.

And he’s working hard toward his main goal: a better understanding of the causes of ALS that will, ultimately, lead to effective treatments and a cure.

Unfortunately, he’s racing against a clock that’s powered by ALS.

“Since my diagnosis, I’ve progressed considerably,” Dr. Desikan said. “I can't speak, walk, use my hands, or hold my head up. [And] I started on a breathing machine last month because I'm no longer able to take deep breaths.”

Yet, his work continues, along with his pursuit of hobbies, like honing his DJ skills at parties he throws for his friends.

“I was a DJ before my disease set in,” he said. “Now, thanks to technology, I’ve grown as a DJ and remix and produce music. ALS forced me to abandon the limits that I placed on myself musically. Now I feel one with all music and I listen without prejudice.”

When asked about his legacy, Dr. Desikan said he wants to be remembered as “a father, husband, son, and friend who gave his all, every day.” He continued, “You don’t get to choose whether you get ALS. The only choice you have is what you do when you get sick.”

You can learn more about Dr. Desikan’s research here and here.

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