ALS Researcher Living With ALS Continues to Work Toward a Cure

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

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.

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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.

As the ALS Ice Bucket Challenge proved, small actions of a few can have a major impact. Or, as we like to put it, Every Drop Adds Up!

5 thoughts on “ALS Researcher Living With ALS Continues to Work Toward a Cure”

  1. Dr.Desikan is phenomenal. His steadfast eagerness to understand ALS and find a cure for it is a great gift for humanity. Is it possible that there is a link between genius and ALS? Some make use of this and perhaps many don’t.


  2. Inspite of setting in of this disease you are doing a lot in your medical profession your other interest in music , family and friends. Your care, love and patience will help you in the long way. Thank you for whatever your to Maya and my grand children Rabi and amar. I am extremely respectful and of you will continue to pray for you all. Maya mother mulund Patti for your children correct me if I said anything wrong. You’re a great personality and proud to be Mami mother-in-law whatever I am to you Dr. Rahul Desikan. I am honoured to be some thing in your life for your children. Thank you


  3. Attn. Dr.Desikan. I am one of the care givers of a 64 y/o Neice. Unfortunately she was diagnosed in Nov. 2017 .She can not speak, moans groans 24/7. Will not sleep. On tube feedings.


  4. I was diagnosed with ALS in October 2016, but had symptoms for a year and a half before that. Mine is slow progressing and I’m thankful for that. I continue to thank God daily for every blessing he has given me in my 64 years of life. Either way I win!


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