Researchers Uncover a Common Link Between ALS and CTE

Recent studies point to a possible connection between ALS and chronic traumatic encephalopathy (CTE), the type of traumatic brain injury associated with playing football and other contact sports. NFL veterans Steve Gleason, Tim Shaw, O.J. Brigance, Dwight Clark, Kevin Turner, and others were diagnosed with ALS after their football careers ended. CTE has also been found in military veterans, who are twice as likely to be diagnosed with ALS.

While 4 to 6 percent of CTE cases end up demonstrating either clinical or pathological characteristics of ALS, called CTE-ALS, the question of whether CTE and ALS are connected remains controversial. Much more needs to be learned to fully understand the connection.

Dr. Michael Strong and colleagues from the Schulich School of Medicine & Dentistry at Western University in Canada delved into the controversy. They compared molecular and pathological signatures of post mortem brain and spinal cord tissue obtained from people who lived with CTE and CTE with ALS (CTE-ALS) compared to controls.

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New Important Insights on How TDP-43 Impacts Intracellular Transport in ALS

New research published recently in the journal Nature Neuroscience provides a detailed analysis of TDP-43 aggregate composition and sheds important new insight on intracellular transport defects in ALS and other neurodegenerative diseases.

TDP-43 protein is a pathological hallmark of both ALS and other neurodegenerative diseases that is mislocalized in the cell’s cytoplasm, the area of the cell that surrounds the nucleus, and accumulates into aggregates — protein clumps. Through funding by The ALS Association and others, Dr. Wilfried Rossoll and colleagues at Mayo Clinic in Jacksonville and Emory University took a deep dive in understanding how TDP-43 is involved in disease.

Their analysis of TDP-43 aggregate composition showed that TDP-43 mislocalization and aggregation causes direct defects in the transport of proteins between the nucleus and cytoplasm though nuclear pores, called nucleocytoplasmic transport. Importantly, they found TDP-43 aggregates in postmortem brains from people who lived with ALS show nuclear pore defects that are comparable to their findings in cells, suggesting a similar disease pathway in humans. Read more to learn about these exciting, novel findings.

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Award-Winning Playwright’s “The Voice Bank” is One-Woman Show about Fight to Keep Speaking with ALS

In January 2014, Terry Fiset, a retired attorney turned theater director, was having trouble speaking and wanted help. She met Andrea Caban, a voice, speech, and accent specialist and the head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB).

Caban suggested changes in Fiset’s posture, breathing, and articulation. These adjustments helped at first, but Fiset soon learned the reason for her struggles: she had ALS.

After Fiset’s diagnosis, Caban began learning more about the disease. She found that the standard practice was not to do anything about patients’ vocal challenges.

“I intuited a modified accent for Terry to use with her weakening muscles. It was very different from her original voice, so we called it ‘Voice 2,’” Caban said.

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IMPACT ALS Survey Gives Vital Insight on ALS Burden

The number of ongoing ALS clinical trials has risen in recent years due to increased awareness and funding of this devastating disease. Consequently, it is more important than ever to integrate people with ALS and their caregivers into the drug development process and to gather their crucial input about ALS burden. Due to these trends, a platform initiative for patient engagement in drug development, called ALS PREFER, was developed and initiated by a collaboration between The ALS Association and top ALS researchers across the country.

The first step was to initiate the IMPACT ALS survey to gather information regarding perspectives of people with ALS and their caregivers as it relates to disease burden, functional outcomes, and views on treatments. Read more to learn about IMPACT ALS and its important results.

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2017: A Year of Big Advances in ALS Research

In 2017, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding several new grants to top scientists and clinicians. We currently fund over 126 projects in eight countries, furthering the best ALS research in the world.

Here are just a few of the biggest advances in ALS research this past year that give us hope! All projects were funded by The ALS Association.

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Annual International Alliance of ALS/MND Associations and MND Association Events Provide Knowledge, Hope, and Inspiration

We always enjoy our time at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association. This year was no exception. We listened, learned, networked, got inspired, caught up with old friends and colleagues, and so much more.

Here’s a summary of some of the interesting ALS and MND (motor neuron disease) research and information from the events held in Boston earlier this month.

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Holiday Traditions and ALS

It’s the most wonderful time of the year. The decorations are beautiful. The lights are magical. People seem cheerier.

There’s the joy of giving and receiving. And, there are family traditions – like cutting down a tree, reading holiday stories, baking cookies, and singing carols – that make everything feel extra special.

For families affected by ALS, the holiday season can bring painful reminders of what the disease has taken away. But, the season conjures as many (or more!) reminders of the love shared among family members.

Christy Kaelin’s father, Ray Sink, passed away from ALS last month. She will miss him terribly this Christmas – her first without him – just as she misses him every day, but she’s thankful to have so many happy holiday stories, including one particular tradition.

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