It was on July 4, 1939, Lou Gehrig Appreciation Day, when the longtime Yankee first baseman uttered the famous words at a home plate ceremony at Yankee Stadium: "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of the earth.” Bill Chadwick used these words on August 8, 2017 to introduce our speaker Karla Wheaton, ALS Northern New England Events Manager – Maine.
Amyotropic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It takes away the ability to move, speak and eat. While it is very hard to diagnose, usually by process of elimination, over 6000 people are diagnosed with this disease every year in the US. At any time, about 200 people in Maine are living with ALS. 60% are men and the average age when it develops is between 40 and 70. It is more common among Caucasians, and military veterans are twice as likely to develop ALS – especially those who served in the Gulf war. Average life span is 2-5 years, although some people can live over 10 years. There are two strains of the disease – one strain is genetic, but it not known why most who develop ALS get it.
ALS NNE supports folks with ALS and their families across Maine, New Hampshire and Vermont. As the preeminent ALS organization, The ALS Association leads the way in research, care services, public education, and public policy – providing help and hope to those facing the disease. Karla shared that as a result of the “ice bucket challenge” that went viral on social media a couple of years back, money raised resulted in development of the first drug in 22 years. While it is not a cure, it has proven to slow down progress of the disease. In addition, The Jackson Laboratory in Bar Harbor recently received and $80K grant to conduct additional research.
By the end of 2017, ALS NNE will be opening a multidisciplinary care clinic at Mid Coast Hospital in Brunswick. This is exciting news for Maine patients who have had to previously travel out of state for specialized care. ALS NNE hosts monthly support groups in Scarborough, Augusta and Bangor. They provide loans of new and gently used medical equipment and communication devices that are frequently needed, in attempt to reduce the financial burden on families. Their Maine care coordinator meets with families to and questions and provide guidance and identify available community resources.
ALS NNE holds two Walk to Defeat ALS events. The one in Portland will be held Saturday September 9. These walks are the chapter’s signature events and their main source of funding. To learn more: Walk to Defeat ALS Portland Sept 2017 or contact Karla at kwheaton@alsnne.org . Volunteers are needed to set up, help with parking and food, and clean up.