Over the past couple of weeks, the ice bucket challenge has raised millions of dollars for ALSA, the ALS Association. It’s also sparked a number of debates about social media and the role it can play in fundraising. To get a better understanding of the disease behind the challenge, we spoke to Dr. Hiroshi Mitsumoto, Director of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University Medical Center and author of Amyotrophic Lateral Sclerosis: A Guide for Patients and Families.
Many know ALS as Lou Gehrig’s disease. Others may remember it from Tuesdays with Morrie. But what is amyotrophic lateral sclerosis? Here’s how Dr. Mitsumoto explains it:
“ALS belongs to a family of inherited and acquired disorders that, together, constitute the motor neuron disease. Motor neurons are those cells in the brain, brainstem, and spinal cord that control the voluntary movements of muscles, and in motor neuron diseases, damage to these calls causes weakness and, sometimes, total paralysis and death. In most cases of ALS, motor neurons degenerate and die prematurely of unknown causes.”
This can lead to painful and debilitating symptoms including fatigue, anxiety, depression, speech problems, spasms, and shortness of breath. There is no cure yet, but the symptoms can be treated.
In recent years, many patients with ALS have been living longer and with less severe side effects. New medications are one reason for this improvement. “A second important reason,” explained by Dr. Mitsumoto, “is that we have not only drastically improved nutrition and respiratory management of the disease, but also general care and management at multidisciplinary ALS clinics. I suspect there are a number of other reasons; however the most significant is the advancement of disease awareness.”
The challenge has certainly made more people aware of ALS. Has it helped? Dr. Mitsumoto says “the ice bucket challenge has given all of us the opportunity to renew our commitment for patient care and research in ALS. Because of this increase in awareness, patients are now taking a much more active role in fighting back against the disease.”
There are a number of important research projects in progress to help find causes of the disease and ways to improve and prolong the lives of people with it. These projects depend on participation from patients and loved ones. One recommended project is the National ALS Registry. The goal is to identify risk factors for ALS and, by doing so, assist in the search for a cure. If you have amyotrophic lateral sclerosis, register at cdc.gov/als to join this important effort.
Through increased awareness and outreach activities, we can all work to make a significant dent on ALS.
For more information on living with ALS, check out Amyotrophic Lateral Sclerosis: A Guide for Patients and Families.