Let's Beat ALS
“His voice has been silenced. He hasn’t.” – Laurie McGinley, The Washington Post
For us, this mission is personal.
His story is one that began with a climactic rise in the world of academia and medicine.
An assistant professor and a rising star researcher, Rahul Desikan, MD, PhD, led a team at the UCSF Laboratory for Precision Neuroimaging researching brain diseases. He had developed a groundbreaking technique to predict the onset of Alzheimer’s disease. He had just begun the biggest study ever of amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s Disease. He was a DJ and is a husband, a father, a son, a friend.
In February of 2017, Rahul was diagnosed with ALS – one of the very diseases that had been the focus of his life’s work.
Now, he has an entirely new perspective and a heightened sense of urgency. Unable to walk or talk, he works from a wheelchair using a hands-free machine that allows him to communicate. With the machine, it takes minutes to type a single sentence. But that hasn’t stopped him. He continues to collaborate, to innovate, to lead.
Since his diagnosis, Rahul has published 25 brain disease-related articles in major scientific journals. He and his team announced the discovery of two genes newly linked to ALS just this April.
The mind behind the machine is still moving at miles a minute.
But we are running out of time.
Diseases that affect the brain are particularly devastating, with the potential to redefine who we are at the most fundamental level.
At any time, over 20,000 people suffer from ALS. This disease spreads rapidly, causing progressive muscle paralysis and leading to death from respiratory failure in just two to five years.
We don’t know who is at risk. We don’t know the rate at which the symptoms will affect people once they have been diagnosed. Although it is the second most common neurodegenerative disease in the Western world, the cause of ALS is poorly understood.
We plan to fix that.
To understand is to better detect, treat, and then prevent.
“My vision is to help people like me who suffer from neurodegenerative diseases and for whom being alive is a daily struggle,” says Rahul.
Led by Rahul and Leo Sugrue, MD, PhD, UCSF assistant professor in residence, the UCSF Laboratory for Precision Neuroimaging’s mission is to better understand ALS to find earlier detection methods, develop more effective treatments, and even prevent it from ever manifesting at all.
The key lies in combining the collective knowledge of visionary scientists across UCSF, advanced genomics technology, and big data. Just as identifying hereditary pathogenic genes and gene mutations in patients’ tumors has helped scientists find effective treatments for particular types of cancer, we are mining genetic data received from 3 million people worldwide to find the genes that may be at the root cause of ALS.
Using this information to create a database, we will analyze the genes shared between ALS and modifiable risk factors, like high cholesterol and inflammation. In doing so, we can develop an inexpensive early screening method for the disease. Called the Polygenic Hazard Score, this method would compare a patient’s combination of risk factor-related genes with those of millions of people in the database. The result would be his or her own personal genetic risk profile for ALS.
By understanding ALS and who is at risk, we can then more rapidly develop effective treatments for patients based on their individual genomes.
Credit: Nick Otto, Bostonia
Will you join us?
“Society needs scientists like us who can take tragedies and turn them into real innovation,” Rahul says. “Above all, we need your support to advance my team’s research and help ALS patients like me.”
Your donations will:
- Enable us to build out the UCSF Laboratory for Precision Neuroimaging space in San Francisco, bringing multidisciplinary researchers and clinicians together in a dedicated space.
- Provide critical financial support for our team, allowing us to continue staffing industry-leading clinicians, programmers, assistants, and research fellows.
- Secure critical resources, such as advanced computer systems and software.
- Allow us to gain access to genetic and imaging databases that are integral to our genomics work.
With your support, we can take the world closer to not only better understanding ALS, but also detecting the disease earlier, developing effective treatments, and preventing ALS.
Dr. Rahul Desikan in the News: