What’s the Ice Bucket Challenge? Learn about ALS and new research into the disease

A Disease Management post on 9/25/2014.   Topics: 

If you spent any time on social media this summer, you’ve probably seen videos of people taking the ALS Ice Bucket Challenge. Participants have included everyday people to celebrities ranging from Jennifer Lopez to Anna Wintour to a surprisingly classy contribution from Sir Patrick Stewart. While it’s entertaining to watch people dump buckets of ice water on themselves, we can’t forget that the challenge was intended to draw attention to amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

At any given time, there are about 30,000 people in the U.S. living with ALS. While that number makes ALS relatively rare compared to heart disease, cancer or other chronic conditions, its debilitating nature – combined with the fact that there is no cure and that progressive nerve cell degeneration leads to death – has inspired the nation to take notice.

So far, the viral campaign has raised more than $113.3 million. If you’re unclear on how the money raised by the Ice Bucket Challenge will help, here’s a chance to learn more.

There is no cure for ALS today
ALS is a disease that affects the nerves that are responsible for voluntary muscle movement. These nerves die at a very rapid rate, and over time, people with ALS lose voluntary control of limbs and other body parts. Some people lose the ability to speak clearly or swallow. The order in which these symptoms appear can vary.

Eventually, ALS affects the diaphragm and other muscles in the chest that are needed to breathe, and patients often require a ventilator. Most patients die within three to five years after their symptoms begin. Only about 10 percent of people will live for 10 or more years.

There is no cure for ALS, but doctors may prescribe medications to slow down the rate of nerve degeneration. Patients may also work with various therapists to keep muscles functional as long as possible, improve speech and maintain good nutrition. Otherwise, very little is known about the precise cause of ALS, or how to better treat the disease. This underscores the need for more research funding.

Where do the Ice Bucket Challenge funds go?
Participants who donate through the Ice Bucket Challenge typically send their money to The ALS Association, which divides its funds among projects for research, provision of compassionate care and education of both the public and medical professionals. As of March 2014, the organization was overseeing $18.1 million of research money distributed to 98 projects. In August 2014, it announced another $3.5 million would be given to another 21 projects.

According to The ALS Association, its various projects focus on:

  • The process in which the disease progresses
  • How ALS relates to the genes
  • How environmental factors – toxins, diet, pesticides, exercise, viruses, warfare – can interact with gene mutations in ALS
  • Potential therapies, including a form of gene therapy that silences genetic messages that drive the disease

In 2014, the organization announced progress in learning how exercise may reduce the risk of ALS, using biomarkers to make clinical trials more efficient, and helping nerve cells survive.

If you or someone you know has been affected by ALS, you can learn about the latest research, currently available therapies and clinical trials by talking to a personal health advisor. These professionals have access to specialists who stay up to date on the latest science focused on rare diseases like ALS.


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