Researchers Find a New Gene Linked to Sporadic ALS

Researchers have found a new gene that is linked to sporadic amyotrophic lateral sclerosis (ALS). Richard Bedlack said, “We’re certainly one step closer to understanding this disease. It’s been very difficult to understand.” This new gene is called TBK-1. According to Bedlack, everyone has the TBK gene, but those with ALS have a mutated form of this gene.

TBK-1 normally plays a complex role in the immune system which includes inflammation (a reaction to injury or infection), and autophagy (a process involved in removal of damaged cellular components). Much is known about the genes behind familial ALS, but only a few have been linked to sporadic ALS, which includes about 90% of ALS patients.

This data was achieved through a “next-generation” study which used advanced DNA sequencing methods. This study included the exomes of 2,874 ALS patients and 6,405 control exomes. This is the largest number of ALS patients ever sequenced in a single study. The study included over two dozen laboratories in six countries. This collaboration with multiple countries is a good sign for ALS. Lucie Brujin, PhD, said that this study, “…highlights the global and collaborative nature of ALS research today.

This new and exciting discovery highlights the progress ALS research has made. Sporadic ALS has confused the ALS world for quite a while, and this discovery brings us one step closer to finding a cure. As Dr. Merit Cudkowitz said, “This is a time of great hope in ALS.”

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A Man With ALS Says “I Love You” to His Wife for the First Time in 15 Years

“I love you Lorraine.”

These were the first words spoken by Don Moir in 15 years. Don was diagnosed with ALS in 1995, and has been living with this debilitating disease ever since then. In 1999, Don was outfitted with a ventilator, which took away his ability to speak. Ever since then, he has been unable to speak, and has used a simple letter board as his way to communicate with his family.

After years of taking care of Don, Lorraine heard an interview with Mick Ebeling, the founder of Not Impossible Labs. Mick was discussing an invention known as the Eyewriter. The Eyewriter is a device that is similar to glasses, but enables people who can’t move to speak, by simply moving their eyes.

Javed Gangjee, a volunteer and engineer for Not Impossible Labs, worked with Don for over a year in an attempt to restore Don’s ability to speak. Since Don had never used a computer before, this was a difficult process. Javed then started using Don’s letter board and was able to create a program that Don was able to use.

When they had Don use the technology for the first time, Don’s simple message was “I love you Lorraine.”

For more information on Don and his journey, see video


Where are We Six Months after the ALS Ice Bucket Challenge?

Where are we six months after the Ice Bucket Challenge? In a recent article by CNBC, it noted the researchers and patient services were able to benefit from the over $115 million raised by the biggest idea in charitable giving in the history of ALS.

As an example, a previously rejected grant proposal by John Landers to sequence the genomes of patients with Lou Gehrig’s disease, as part of a worldwide project to better understand the illness, was now funded to the tune of $1M.

The report described additional help for specific projects to move the field forward:

The grant to Project MinE was one of four the ALS Association announced in October as part of the initial $22 million it allocated. The others are going to a partnership between academia and industry, called ALS Accelerated Therapeutics, to speed drug development; the New York Genome Center, to further explore the genetic basis of the disease; and three medical labs in California in a project called Neuro Collaborative, which also works on drug development.

The association aims to invest $21 million to $25 million a year in research projects, spokeswoman Carrie Munk said.

Most exciting is the excitement felt by the research community. The ALS Association has received triple the number of applications for grants for young scientists than in previous years.

Hopes are high that the windfall will lead to landmark discoveries in ALS.