If you had not before this Summer, you have certainly by now heard of ALS, sometimes called “Lou Gehrig’s Disease.” Raising money and awareness through the Ice Bucket Challenge has placed ALS in the spotlight.
Amyotrophic Lateral Sclerosis is a neurodegenerative disease that affects the motor neurons in the Central Nervous System (CNS). “Amyotrophic” can be translated to “No muscle nourishment,” what is actually happening is the neurons which control the muscle have died, meaning the muscle can no longer be controlled voluntarily. “”Lateral” describes the portion of the spinal column in which the neurons are located. “Sclerosis” is a term for scarring, referring to the hardening of areas in which the neurons have died. As ALS progresses in a patient, the degeneration of the motor neurons causes paralyses, If you recall Stephen Hawking, 40 years ago he was wheelchair bound and mildly spastic. He was able to father children and have a relatively normal life within his accommodations. Today, his communication is limited to a synthetic voice controlled by a computer, which he operates with his cheek muscle, one of the few muscles he is still able to control.
Like Lou Gehrig, Stephen Hawking is a famous person putting a face on the disease, which is relatively rare, affecting about two of every one hundred thousand people, about 140,000 people in the world, 6300 in the United States. There is no cure or treatment to end or reverse the degeneration, but a drug from Sanofi-Aventis, Riluzole, may slow the progression of the disease. It’s hard to tell with statements such as that. Stephen was diagnosed with ALS over fifty years ago, life expectancy is rarely more than ten years after diagnosis. My own experience with chronic disease has been some drugs work for some people, each case is different. I was diagnosed with MS twenty five years ago, none of the drugs that have been developed work for me (in fact a few made me worse), but my outward symptoms are barely noticeable. On the other hand, one woman who was diagnosed at the same time as me died within six months.
I have a friend who has been raising money for the ALS foundation for years. Every February she is involved in a “Valentine’s Day Plunge” in Manasquan New Jersey, in which people are sponsored to jump into the Atlantic surf to raise money for ALS research. In a bizarre twist of fate, her husband was diagnosed with ALS last year. She has organized a benefit for her husband Danny, and will continue with the Valentine’s Day Plunge, but she also has made popular among our circle of friends the Ice Bucket Challenge, which has now “gone viral.” I don’t know where it started, but we were doing it before it hit the news.
The idea behind the Ice Bucket Challenge is to raise money, but in popular culture it has turned into “raising awareness.” Well, a lot of people now know about dumping a bucket of cold water on themselves, but I don’t know that many know about the disease or are making contributions. Thus this article.
No amount of cold water or awareness is going to curb ALS, or any other disease. Awareness is certainly nice, with eighteen times as many patients, MS is largely misunderstood and I do find it quite annoying when people misinterpret my condition. Since I was diagnosed eight treatments for MS have been developed, none of which work for me. There is one drug for ALS, if it doesn’t work for you you have no other avenues. It could be worse, I had a friend in the Police Department I worked in who developed a disease only three other people in the United States had. He was the only guinea pig when research needed to be done. He vacationed at the NIH each year, no drug companies were interested in a drug that would have a handful of customers.
There is more than research that your donations provide. Most organizations provide support for patients as well. The American Cancer Society provided transportation for Emma to get to her Chemo and Radiation treatments, and provides wigs for patients who lose their hair. The MS and ALS foundations have outreach programs to assist with the daily needs of families affected by the respective diseases. Government funding is drying up, so not only do contributions go directly to research, they also pay for lobbyists to promote funding in Congress.
Being aware is not enough. Caring is nice, but only a sociopath doesn’t care. Money is what will make a difference. This year the Ice Bucket Challenge has inspired a flood of donations to the ALS association, $94 million so far. In reality that isn’t much money when you consider the price of laboratory equipment and facilities on top of the daily assistance provided to ALS patients, it amounts to roughly $671 per patient (worldwide).
If you do not have the money or time to give, at least educate yourself about these diseases. Understand what that friend of yours is going through. That alone can make a world of difference.