With $70 million in donations, where does the ALS money go now?

As of Sunday, 24 August, the United States' ALS Association had received $70.2 million in donations thanks to the Ice Bucket Challenge, compared to $2.5 million during the same time period last year - July 29 to August 24.

These donations have come from existing donors and 1.3 million new donors to the association.

The ALS Ice Bucket Challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. People can either accept the challenge or make a donation to an ALS Charity of their choice, or do both.

Barbara J. Newhouse, president and CEO of the ALS Association, says the increased awareness and unprecedented financial support will enable the association to think outside the box.

"We will be able to strategize about efforts in ways that previously would not have been possible, all while we work to fulfill and enhance our existing mission priorities nationwide.

"These priorities include funding groundbreaking research in laboratories across the globe. We presently support 98 active projects and recently announced $3.5 million in funding for 21 new projects led by the world’s top scientists. The ALS Association has championed some of the most significant discoveries to date."

The ALS Association will also provide vital support and care services through its nationwide network of chapters to people with ALS and their families in the form of support groups, medical equipment, respite grants and more; and empower ALS advocates to encourage their elected officials to support and advance issues important to the ALS community.

Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them.  Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.

Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. Annually, ALS is responsible for two deaths per 100,000 people.

The average life expectancy of a person with ALS is two to five years from time of diagnosis.  With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis.  About 20 percent live five years or more, and up to ten percent will survive more than ten years.