A Clinical Trails Primer

First, the obvious: everyone wishes there were more effective ALS treatments found already. Progress is being made, with five new genes discovered and two new treatments in the last five years—we are closer than ever to the possibility of a cure. But, even as we talk about how there have been real, tangible discoveries in ALS research, we cannot yet point to a reliable treatment to dramatically slow progression of the disease, let alone a treatment that stops progression or acts as a cure. It is heartbreaking for people with ALS and their families.

But for people with ALS, there is an active role they can take in fighting the disease: by participating in a clinical trial. For while the search new therapies begins in the laboratory, where ideas for new treatments are tested in cell cultures or test tubes, if a treatment shows enough promise it must eventually be tested on the intended end user, meaning human beings—living, breathing people.

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ALS Research—The Pace of Discover Is on the Rise

From the outside, research can seem like an endless process. As much as we all yearn for the “AH HA!” moment of discovery, more often than not the gains from any sort of research are incremental. Not so much finding a needle in a haystack as a slow, methodical, documented labeling of this piece of hay, then this piece, then this piece….As Thomas Edison said about the process of researching and creating the lightbulb: “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

ALS research has proven to be just such a challenge to the best minds in the medical and scientific communities. But recent advances are creating excitement about new ideas and opportunities, aided in no small part by the influx of funding created by the Ice Bucket Challenge. With all that is going on, we wanted to take a moment to look at what is happening in ALS research—to see what is new, what is promising, and what the future may hold.

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Using Medical Marijuana to Treat ALS Symptoms

When it comes to treating symptoms associated with ALS, people will try a variety of methods to see what will work best for them. Among those options is medical marijuana, or cannabis. Although this can be a controversial treatment method depending on where you live and your outlook on the drug, some people with ALS believe the benefits provided by cannabis makes it easier to live with ALS. Here’s what you should know about cannabis and ALS treatment.*

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ALS and Frontotemporal Degeneration

It is a known fact that frontotemporal degneration (FTD) is connected to ALS and complicates an already difficult diagnosis. In light of World FTD Awareness Week, here are more details on the connection between ALS and FTD. Republished with permission from The Association for Frontotemporal Degeneration (AFD)


The discovery in 2011 that the C9orf72 gene mutation can cause both FTD and amyotrophic lateral sclerosis (ALS) has transformed a long held belief that ALS is ‘purely’ a movement disorder and that FTD is ‘purely’ a cognitive or behavioral form of dementia.

It is now recognized that the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. We now know that several other genes can also cause both diseases. FTD or frontotemporal degeneration is a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes. ALS is a neurodegenerative disease with loss of upper (located in the brain) and lower (located in the spinal cord) motor neurons that leads to paralysis, dysphagia, dysarthria and eventually respiratory failure.

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Every August Until a Cure

LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause.  It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.

What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure.  The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.

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5 Things to Know Before Enrolling in the National ALS Registry

The National ALS Registry is used to collect, manage and analyze data about people with ALS. The more people signed into the Registry, the more information researchers have access to in their work toward a cure, treatment, and prevention. When people with ALS include themselves in the National ALS Registry, they’re including themselves in the national effort to end ALS.

Because the Registry is its own unique research project and requires people with ALS to join the Registry directly, here are five things people with ALS should know before enrolling.

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After 25 years I’m Still Fighting Against ALS

By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter

Although I think of my dad often, Father’s Day always brings with it a special pang of sadness.  It’s been 25 years now that I have not been able to spend Father’s Day with him  —  he lost his battle to ALS in September of 1992.  As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives.  My kids never got the opportunity to know what a great man he was.  My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.

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