Guest Post: ‘I Would Still Serve My Country’

By Russell Mikunda

Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.

I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.

I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.

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Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’

By Stan Williams

Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.

Attending the National ALS Advocacy Conference left me with the unmistakable conclusion that those with the most to lose should be speaking the loudest. We must explain to our elected officials how their inaction affects people living with ALS.

Our real-life experiences of my own battle with ALS, including my wife’s challenges as my caregiver, had an impact on the Congressmen. They listened intently. Some even shed a tear or two.

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Guest Post: ‘I’m Really Fighting for My Family’

By Stacy Crowder

There’s no sugarcoating it. ALS is terrible.

Unlike many fathers this Halloween, I couldn’t carve a pumpkin with my kids. I also couldn’t help them put on their costumes or take them trick-or-treating.

I didn’t know much about ALS before my diagnosis, but I became an expert pretty quick. I also got to work fighting – and not just for me but to bring hope to everyone living with ALS.

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Precise ALS Worm Model Gives Insight into How Motor Neurons Die

Why motor neurons die in ALS largely remains a mystery. In a study funded by The ALS Association, Dr. Anne Hart, professor of neuroscience at the Carney Institute for Brain Science at Brown University, and her colleagues gained insight into why some types of motor neurons die, while other don’t. A paper about the study was recently published in PLOS Genetics.

Interestingly, Dr. Hart and her team used microscopic worms, called C. elegans, which maintain conserved ALS genes seen in humans to create the first precise worm models for SOD1 ALS, the second most common genetic cause of inherited ALS, using gene editing.

Motor neurons are the cells that die in ALS. Basically, a person has two types of motor neurons. Upper motor neurons (UMNs) connect the primary motor cortex in the brain (area of the brain that controls voluntary movement) to the spinal cord. UMNs use glutamate, a type of neurotransmitter, to send signals and communicate with each other.

Lower motor neurons (LMNs) connect the spinal cord to muscle and use acetylcholine as a neurotransmitter. (See diagram below.) It is not clear why, in some people with ALS, one or both types of motor neurons die.

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Guest Post: Putting the Brakes on ALS – The Power of Community

By Kaisha Johnson and Cliff Whitlock, The ALS Association Golden West Chapter

More than 1,200 participants, volunteers, and members of the community came together for a family-friendly day of celebration, exercise, education, awareness, music, food, and family fun at The ALS Association Golden West Chapter’s 14th annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 22.

Together, these dedicated individuals raised more than $920,000 on event day toward a $1 million goal to fund the mission priorities of the Golden West Chapter in care services, advocacy, and research.

Held at the California Veterans Home in Yountville, the annual Fall event brings incredible energy and an outpouring of support for those affected by ALS in California and around the world. Many participants said it was the best ride they’ve attended.

There was an incredible outpouring of community support, including more than 140 volunteers who set up, checked in participants, served food and drinks, supported rest stops and the six bike routes, cheered on all of our incredible riders and walkers as they crossed the finish line, and so much more.

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Certified Treatment Center of Excellence Spotlight: ALS Treatment and Research Center at UCSF

Our national network of 63 Certified Treatment Centers of Excellence (CTCEs) provides robust, expert multidisciplinary ALS care and services in a supportive atmosphere, emphasizing hope and quality of life. Studies show attending a multidisciplinary clinic can extend survival, increase quality of life, and improve access to potential therapies.

CTCEs bring together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

Teams typically include a neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a nurse, a dietitian, a speech-language pathologist, a social worker, a mental health professional, and a liaison from The ALS Association.

Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one. This is the third in an ongoing series of CTCE spotlights.

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Meet Dr. James Shorter: ALS Researcher Dedicated to Understanding What Causes ALS

Meet Dr. James Shorter, professor of Biochemistry and Biophysics at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia. He and his team work tirelessly in the lab to better understand the causes of ALS, so those causes can be translated into potential therapeutic targets. The ALS Association has proudly funded him since 2014.

Dr. Shorter’s work focuses on protein homeostasis, which is how proteins in the cells of the body fold into specialized structures to perform specific functions. Sometimes protein misfolding occurs, which allows the formation of protein aggregates (clumps of protein).

When protein aggregates are in the form of fibrils and oligomers, they can be harmful to cells. Dr. Shorter and his team’s goal is to understand how protein misfolding occurs and how cells can prevent it from happening.

In ALS disease, it is known that certain RNA-binding proteins, such as TDP-43, FUS, hnRNPA1, and hnRNPA2, mis-localize from the cell’s nucleus into the cytoplasm and accumulate in cytoplasmic aggregates (protein clumps). Mutations in a specific area of these proteins, called prion-like domains, play a part in accelerating fibrillization that causes toxicity in cells.

Continue reading Meet Dr. James Shorter: ALS Researcher Dedicated to Understanding What Causes ALS