The Arkansas Chapter of the ALS Association is thankful to all of those who have joined forces with us in bringing much-needed awareness of this horrific disease, which is 100 percent fatal, 100 percent of the time. Not only has the awareness been sought after for eight-plus years since the ALS Arkansas Chapter was formed, but the donations from this energized event will markedly allow us to pay for more respite care grants, equipment grants, grants for food and gasoline for our pALS (people living with ALS) who are dying in our state.
We currently assist 108 pALS as an organization. The Ice Bucket Challenge has allowed several new pALS to reach us in the past few weeks, which has been our mission from the beginning. We are here to help, educate and support in absolutely every aspect of their lives.
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Voluntary muscle action is progressively affected when motor neuron cells die and patients may become totally paralyzed, leaving them in a trapped body and no longer able to speak, eat, embrace loved ones, move their heads, arms or legs. Yet, through it all, most peoples' minds remain active and unaffected while their body dies around them. Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone dies as a result of ALS. Life expectancy for most people with ALS is usually 2-5 years following diagnosis. Not only is the disease physically debilitating, but also financially. The average cost to keep an ALS patient at home is $250,000 a year.
There is no known cause or cure for ALS thus the awareness of the Ice Bucket Challenge will allow continued global research to help find a cause and cure. The mission of the ALS Association is to lead the way in research, patient and community services, public education and advocacy. The association wants to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support. Our chapter also works closely with UAMS in Little Rock through the Thomas May Center for ALS Research.
We are the only recognized source of help for our pALS and their families in Arkansas. We receive no backing from the government or the ALS National Association. Every dime we raise is used to support our pALS. We do send 13.9 percent of our funds to the National Association to help in the continued fight for a cure.
Again, we thank every company, friend, family, acquaintance and our pALS for taking this challenge seriously in our state and nationwide to spread the awareness to our cause and mission to find a cure of this deadly disease and, until then, to assist and support the families who are on this journey.
Please keep the Ice Bucket Challenge going to continue the awareness. Our pALS and their families appreciate your efforts.
JENNIFER NECESSARY IS EXECUTIVE DIRECTOR OF THE ALS ASSOCIATION-ARKANSAS CHAPTER INC.
Commentary on 09/01/2014