An #IceBucketChallenge

by Shane L. Larson

The planet Earth, like many planets I suppose, is a planet of wonders. Its landscapes are carved and wrought over aeons of geologic time by titanic forces that are almost beyond our comprehension. Mountains soar to altitudes so high a human can barely breathe; the ocean hides dark depths that have never seen the light of the Sun and never will. Entire continents move, shifting slow and steady, a few inches per year, until the world has utterly changed its face.

One of the greatest wonders of our small blue world, and so far as we know a unique one, is life. Life appears on this planet in myriad forms, and new forms are constantly being discovered and categorized. Over the last several centuries, we have slowly assembled our understanding of the machinery of life — how it works, how it survives, how it perishes.

At the frontiers of our investigations about the workings of life are our attempts to understand the nature of disease. For many diseases, we understand their symptoms, and in some cases what causes a particular disease. We do not in all cases know how to deal with — or how to cure — diseases.

Lou Gehrig in the dugout at Briggs Stadium (now Tigers Stadium) in Detroit, on 2 May 1939. The game marked the end of his 2,130 consecutive game playing streak.

One example is amyotrophic lateral sclerosis (ALS) disease. It is the most common of several degenerative motor neuron disorders. These diseases affect the cells in your nervous system (motor neurons) that control voluntary muscle activity (walking, speaking, breathing, etc.).  In the United States, ALS is commonly known as “Lou Gehrig’s disease,” named after the famed first baseman who played for the New York Yankees from 1923 to 1939. Gehrig was a powerhouse hitter in his day, holding the career grand-slam record (23) for 74 years until it was broken by Alex Rodriguez in 2013, and also the record for most consecutive games played (2130), a record that stood for 56 years until it was broken by Cal Ripken, Jr. in 1995.  Gehrig’s performance and health decreased rapidly in the 1938-39 seasons. He voluntarily benched himself on 2 May 1939 in a game against the Detroit Tigers, ending his consecutive game streak. The Detroit Tigers fans honored him with a standing ovation. In June of 1939, he visited the Mayo Clinic in Rochester, Minnesota, where he was diagnosed with ALS. He passed away two years later, on 2 June 1941.

In the gravitational physics community, we are at least sub-conciously aware of ALS because it affects one of our own colleagues — Stephen Hawking. Hawking was diagnosed with ALS at a very young age, in 1963 when he was only 21. The life expectancy of those afflicted with ALS is, on average, just a few years; Hawking was told he had about two years to live. Against all odds, he has survived well beyond that prognosis, now made 51 years ago. Hawking is one of a rare few who have survived for so long. It doesn’t happen often, but it does happen. In the time he has had, he has contributed immeasurably to our knowledge of gravitational physics. In 1970, working in classical cosmology he proved a singularity theorem that showed there was a point of infinite density associated with the Big Bang. In 1974 he discovered that black holes over time evaporate, fading away into nothing; we still don’t know what happens during their last moments. In 1988, he published “A Brief History of Time,” one of the best selling public science books of all time, with more than 10 million copies in print.

Few with ALS live as long has Hawking has. Most, like Lou Gehrig, die after only a few years, typically when they lose the ability to trigger the muscles that control breathing or swallowing. There is no known cure for ALS, but in the last few years medical research has begun to reveal what some of the causes are.

Diseases are a part of life. Some diseases are caused by one kind of lifeform infecting another; AIDS is a classic example, caused by a virus that infects the human body. Other diseases, like ALS, appear to be a result of a lifeform’s own machinery malfunctioning or breaking down in some fashion. In ancient times, before science and modern medicine, diseases were poorly understood. Sickness, particularly devastating and debilitating illnesses, killed quickly and were viewed with fear and superstition.  The advent of scientific research began to shed light into the dark corners of our biology, allowing us to understand, at least in part, how to avoid and combat some diseases.  The development of scientific research over the past four centuries has evolved our perceptions of diseases from superstition to knowledge.

So what do we know about ALS?  It was first identified as a distinct disorder in 1869 by French neurologist Jean-Martin Charcot, who was also the first person to identify multiple sclerosis. However, after its initial identification, very little progress was made in understanding the disease. It wasn’t until 1991 that any kind of genetic connection was made.  Since then, it has also be found that abnormal proteins and neurotransmitters seem to be related to the disease, but our understanding is still evolving. In about 10% of cases, genetics are a contributing factor to the development of ALS. In the remaining cases, where there is no known family history, the causes of ALS are virtually unknown.

Like all scientific investigations, medical research takes time and resources, and progresses slowly. We cannot know what investigations will lead to a breakthrough, so work progresses on many fronts — genetic investigations, studies of degenerating nerve cells,  looking for correlations in environment or lifestyles, searches for therapies and drugs that ameliorate symptoms and prolong life, and more. Eventually, these avenues of investigation lead to treatments and perhaps, someday, cures.

ALS, like other motor neuron diseases, is incredibly difficult to understand and fight. In the United States there is only a single drug approved to use in the fight against ALS, but its efficacy is limited, extending life by only a few months at most. More research is needed; research requires resources.

The ALS Association (http://www.alsa.org/) is an organization dedicated to fighting ALS. It helps fund research internationally, aids patients and families who are living with ALS every day, and works to educate the public about this disease. As a non-profit organization, they are reliant on donations to fund their battle. This year, a viral donation campaign has started to support the fight against ALS, known as the ALS Ice Bucket Challenge. It’s the reason you are reading this post right now.

It goes something like this: I dump a bucket of ice on my head and challenge three other people to do the same within 24 hours or make a donation to ALS research.  Click the donate button the upper right of the ALSA homepage.

I have made two ALS Ice Bucket Videos for the different social media milieus where I post most often — Facebook, and Twitter.  On Facebook, I have challenged several of my friends: they are Trae Winter, Jackie Anderson, and David Zartman.

On Twitter, I have challenged some other folks whom I have not yet found have participated in the challenge. They are: Phil Plait (@BadAstronomer), Scirens (@Scirens), and Lucianne Walcowicz (@shaka_lulu). I also put out a special 4th challenge to another acquaintance of mine: the President and CEO of the Adler Planetarium, Michelle Larson (@AdlerPrez).

In addition to making my challenges, I have also made a monetary donation to the ALSA, and written this blog. Perhaps I’m sentimental because Hawking is a colleague in my scientific field. Perhaps I wonder where physics would be if Hawking had succumbed to ALS in his youth, and by simple extrapolation wonder how much the world has lost because of those that this disease — that any disease — has taken from us. And perhaps I’m just hearing my mother’s voice, telling me that everyone who can help, should help. I can help with this.

—————————————————

I don’t have any personal friends that I know of who are fighting against ALS. I do however have many friends who are battling or have battled severe and life threatening illnesses — cancer, multiple sclerosis, diabetes, leukemia. This post is dedicated to them all, with much love, admiration, and hope.