“I was born to talk,” declared our 8-year-old granddaughter Caroline after a ballet recital, where she was expected to keep silent during the performance. She is a person who finds it easy to converse with anyone, and relishes the opportunity to do so. I believe that’s a trait someone is born with, if they're so fortunate.
My older brother Scott is another such person. He chose the perfect career in sales in the fruit industry, and spent his days chatting with customers on the phone, mingling with workers in the warehouses, and traveling the world selling apples, making new friends and solidifying old friendships along the way. He charms us, challenges us, comforts us, and makes us laugh, all with his thoughtful, and often spontaneous, choice of words. It’s one of the many things I’ve always admired about Scott.
But ALS is a thief. First, it stole from him the use of his hands and feet, relegating him to a wheelchair. Not being satisfied there, the disease progressed upwards, and over the past several months, it has taken from Scott the joy of sharing a meal with his family and friends. It’s become difficult to swallow, so most of his nutrition now comes via a feeding tube.
Another challenge he faces is something we all take for granted every minute of every day. To simply and easily breathe. This disease, amyotrophic lateral sclerosis (ALS), refuses to slow it’s attack on my brother. However, Scott continues to stare his relentless opponent down, accepting every indignity and setback with strength, grace, and humor. In an effort to preserve his breath, my big brother has become a man of much fewer words. He still fills a room with his large presence, he just does it more quietly now.
I hate ALS. I can’t imagine my world without Scott in it. He was one of my first friends, and he will always be one of my greatest loves. But we know how this will end, because there is no treatment or cure for this terrible disease. Yet.
I am asking you to join me again to support our annual fundraiser, ‘Ales for ALS’ (www.alesforals.com). The event kicks off at noon on Saturday, June 29th, at Bale Breaker Brewing Company. As always, it is family friendly and free of charge. Help us raise money to support the important research being done at ALS Therapy Development Institute (ALS TDI) to bring an end to this disease. If you are unable to attend, would you consider making a donation online? Please go to: www.als.net to make your tax-free contribution. Your gift is greatly appreciated.
I wouldn’t describe myself as someone who was “born to talk”. Perhaps I never felt I needed to say much, as the middle daughter in a family of five kids, and the number 15 cousin out of 30 in the magnificent Hanses clan. I was even born on a Wednesday! However, I will raise my voice now, and every day hereafter, until a treatment and cure is found for ALS. Please help us #endALS.
Mike and Cheryl Hanses Smith
Founders of Ales for ALS
"ALS is not an incurable disease. It is an underfunded one.” Dr. Stan Appel, MD
Posted June 25, 2019