Rahul Desikan, MD, PhD, Faculty Member and Friend, Is Living with ALS While Working Toward a Cure

Among neurologic disorders, neurodegenerative conditions such as Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis (ALS) stand out for their debilitating impact on patients, families and society. They are widely prevalent and yet remain poorly understood, costly and incurable. Rahul Desikan, MD, PhD and his research group are poised to answer what I consider the fundamental question of neurodegenerative disease – who is at risk? Answering this question will transform our understanding of these disorders and enable the development of innovative treatments that are capable of staving off their onset and reducing the rate at which they progress.

Dr. Desikan has worked for years to answer this question. He has developed ground-breaking, big data techniques that use genetic, imaging and other data to predict the onset of Alzheimer’s in asymptomatic patients, noninvasively identify the burden of neuropathological brain changes in Alzheimer’s, and illustrated genetic overlap between different neurodegenerative conditions.

Through a cruel twist of fate, he was himself diagnosed with ALS in February 2017. Many of you have read Dr. Desikan’s story in the Washington Post. “I love my research, and it gives me reason to live,” he told Laurie McGinley in their interview.

His resolve, passion for discovery and zest for life in the face of tremendous adversity serve as inspiration for us all. Dr. Desikan and his team have produced amazing research. Since his diagnosis, Dr. Desikan has been an author on 25 papers in major academic journals on topics such as Alzheimer’s disease, Parkinson’s disease and schizophrenia. In February 2018, he was part of a team of researchers that released results of the largest Frontotemporal Dementia (FTD) genetics study to date. In April 2018, he was part of another team that released the largest analysis to date of genetic data in ALS. As part of this ALS study, Dr. Desikan and fellow researchers announced the discovery of two new genes associated with the disease – one of which is also associated with FTD.

The disease has fueled his insatiable drive to understand the variables that define risk. Answering this fundamental question of neurodegenerative disease will have far-reaching implications across a host of disorders. And afforded appropriate resources, there is no one more capable.

Dr. Desikan is seeking crowdfunding for his project. Identification of genetic risk factors for ALS has already given Dr. Desikan and his research group important insights into the molecular mechanisms underlying ALS, and they have developed and validated genetic methods for discovering new genes associated with different diseases. His project hopes to continue identifying new ALS genes, discovering shared and modifiable risk factors with other conditions (such as high cholesterol and inflammation) and find the roles these risk factors might play in ALS-associated neurodegeneration.

Discoveries made from this research will help improve understanding of ALS, identify new therapeutic targets, identify people who are at risk for ALS and other potentially-related conditions, and find out ways to overall prevent ALS.

Visit his project page to donate.

Check back with us for future updates on this project and read more about the research already released by Dr. Desikan and his team.

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