On March 6, 2016, a bomb went off in my life. Its name was ALS. I had vaguely heard of ALS by way of YouTube “Ice Bucket Challenge” videoes. But that day, the most important person in my life, my Dad, Dr. John J. Hutton, was given, as he termed in, “a death sentence.” He . . .
I don’t know about you, my ALS brothers and sisters, but there have been times during my ALS sojourn when I have needed a real laugh to chase the blues away … But at some point, when speaking and breathing became more of an effort, I lost the ability to laugh. I, who had spent . . .
I have been in education for thirty-six years, first as a student and now a teacher entering her seventeenth year in the classroom. Over the years, there have been hundreds of lessons that I’ve either learned or taught about living with spinal muscular atrophy and using a wheelchair. But there are four in particular that stick . . .
A bright light in our community has been extinguished. Ray Spooner — beloved husband, father, grandfather, son, brother, nurse midwife and cyclist — died yesterday, August 8, 2016, of ALS. Ray was diagnosed in 2014, just months after participating in the inaugural Ice Bucket Challenge, and in 2015 set off to cross an item off . . .
Paul Robertson can tell you how falling down can change the course of your life, twice—for worse and for better. For many years, he experienced a series of trips and stumbles, small difficulties getting around and a propensity to catch his feet and toes. His sister Nicole, 11 years younger, had similar tendencies. Maybe they . . .
At the age of 2, Lorraine Woodward was diagnosed with limb-girdle muscular dystrophy (LGMD), and doctors told her parents that she would not live past 16 years old. Now, at age 54, she has more than outlived those early predictions and made a successful life as a wife, mother, volunteer and entrepreneur. From an early age Lorraine . . .
Doctor after doctor told Tira Ingersoll Foster that she wasn’t going to be able to have children. She proved them wrong, three times over. Tira with her husband Jimmy Born with a rare type of congenital myopathy, Tira is now mom to three healthy children: 5-year-old Tacari, 10-year-old Jaiden and 14-year-old Nylah. “I motivated myself and . . .
When Dr. Ryan Wuebbles stepped into a lab in 2002 to study muscular dystrophy, he wasn’t just a bright-eyed, eager graduate student. He was also a young man who wanted to understand his own disease.
Earlier this Spring, I had the honor of taking part in the 3rd annual Strength, Science and Stories of Inspiration event at the Harvard Science Center in Cambridge, Massachusetts. As a patient with dysferlinopathy (a form of muscular dystrophy), I was heartened to see every seat in the 500-person auditorium filled to support the mission of finding . . .
Once you open up to the idea that there just might still be some good in the world, and in your life, you begin to see it. It may seem small and insignificant, at least at first. But if it’s good, notice it. Acknowledge it. Give thanks for it. ~Patty Blake We’d like to take . . .
