For many, amyotrophic lateral sclerosis is a fast disease. Once diagnosed, the average life expectancy for a person with ALS can be as few as three to five years. When Ben Thomas received his ALS diagnosis at the age of 29 — just three months after the birth of his only daughter, Emmerson — his world was turned upside down.
MDA vs. ALS
MDA is the world leader in funding ALS research and services.
“Knowing, if not all, is almost all,” said Matthew Harms, a neurologist and neurophysiologist from Washington University in St. Louis, in his presentation on genetic testing for neuromuscular disorders at the 2014 MDA Clinical Conference, held in Chicago March 16-19.
Ray created “Fierce Hope” specifically for the MDA Art Collection. He began creating artwork after he was diagnosed with ALS in 2011. Ray uses pastels and holds them between two fingers on one hand guided with the other hand. Some of his artwork has taken as long as nine hours to complete. One of his favorite quotes is “I am not counting my days – I am making my days count.”
A study supported in part by MDA has found that a high-calorie, high-carbohydrate diet is safe and well-tolerated in late-stage amyotrophic lateral sclerosis (ALS), that it leads to moderate weight gain, and that it may slow disease progression.