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Let's Beat ALS

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To understand is to better detect, treat, and then prevent.

To understand is to better detect, treat, and then prevent.

His story was one that began with a climactic rise in the world of academia and medicine.

As co-leader of the UCSF Laboratory for Precision Neuroimaging, Rahul Desikan, MD, PhD, and his team 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.

But in February of 2017, Desikan was diagnosed with ALS – one of the very diseases that had been the focus of his life’s work.

Diseases that affect the brain are particularly devastating, with the potential to redefine who we are at the most fundamental level. At any given time, more than 20,000 people will suffer from ALS. The disease spreads rapidly, causing progressive muscle paralysis and leading to death from respiratory failure in just two to five years.

In the last years of his life, the diagnosis gave Desikan an entirely new perspective and a heightened sense of urgency. Unable to walk or talk, he worked from a wheelchair using a hands-free machine that enabled him to communicate. Although it took minutes to type a single sentence, that never stopped him. He continued to collaborate, innovate, and offer leadership until his death in July of 2019.

After his diagnosis, Desikan published 25 brain disease-related articles in major scientific journals. He and his team also announced the discovery of two genes newly linked to ALS in April of 2019.

The mind behind the machine moved at miles a minute until the end.

Desikan co-led the UCSF Laboratory for Precision Neuroimaging alongside his partner Leo Sugrue, MD, PhD, assistant professor in residence. The lab continues to work to find earlier detection methods, develop more effective treatments, and even prevent ALS from ever manifesting.

The key lies in combining the collective knowledge of visionary scientists across UCSF, advanced genomics technology, and big data.

By mining genetic information from 3 million people worldwide, the lab is searching for the genes that may be at the root cause of ALS. Using this information to create a database and analyze the genes shared between ALS and modifiable risk factors, like high cholesterol and inflammation, their team aims to develop an inexpensive screening method for the disease.

Referred to as the polygenic hazard score (PHS), this multi-gene test would derive an individual’s risk of developing ALS by including information on an individual’s genetic profile and population-based estimates of developing ALS. The result would be the patient’s personalized genetic risk profile for ALS. In effect, the test would identify those who are at greatest risk for developing ALS.

By better understanding ALS, the team can bring the world closer to not only learning who is at risk, but also create earlier detection of the disease and develop effective treatments – all with the singular goal of finally preventing ALS.


Credit: Nick Otto, Bostonia


Will you join us?

“Society needs scientists like us who can take tragedies and turn them into real innovation,” said Rahul. “Above all, we need your support to advance the 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. 


 


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$100.00 was donated anonymously

a year ago
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$100.00 was donated anonymously

2 years ago
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Andy Cunningham donated $250.00

2 years ago
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$100.00 was donated anonymously

2 years ago
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$100.00 was donated anonymously

2 years ago