Do you remember the social media deluge of people drenching themselves with buckets of ice water last year? The ALS ice bucket challenge was all over social media prompting even former President George Bush to participate. The goal of this challenge was to raise money and awareness about ALS. Did you participate? Are you curious where that money went and what that awareness achieved?
First, in case you don’t know, here is what ALS is: amyotrophic lateral sclerosis, or ALS is a progressive neurodegenerative disease with no known origin or cure. ALS causes a gradual weakening of the muscles due to deterioration of the motor neurons in the spinal column. This deterioration often starts in the hands or with difficulty swallowing and talking and eventually affects the ability to speak, breathe, eat and move. Finally ALS leads to full respiratory failure, typically within 3-4 years after the initial diagnosis. An average of 15 adults are diagnosed with ALS every day in the US, which makes finding a cure of paramount importance.
So what did pouring ice water on yourself last summer have to do with this heartbreaking disease? Besides raising awareness for a disease that is not well known, the ice bucket challenge raised over $220 million globally, with $115 million going directly to the National ALS Association. These funds for research are critical. They will fund research for a cure as well as research to better understand the disease and how to better care for those affected by it. According to the ALS Association’s website, www.alsa.org, several million dollars from this fundraising effort have been spent on crucial needs such as clinical trials, drug development, patient and community services, education and other needed resources. Please visit their website to learn more and see other ways you can help locally.
At Breath of Life, our primary desire is to help the growing number of people affected by respiratory disease. This can be as simple as providing nocturnal oxygen therapy for a person with COPD and as complex as tailoring a plan of care involving a non-invasive ventilator for someone with ALS. Have questions? Visit our website for valuable resources, respiratory equipment, pain relief aids or just to chat!