IN THE BEGINNING

by Barbara Byer, WI

In the spring of 2002, our son Ben was a new dad and struggling artist. If he wasn't preparing for an audition, or rehearsing for a play, he was writing, locked up in a room for days. I blamed his thinning hair and unhealthy pallor on not enough sleep or too many cigarettes. Fragmented clues drifted into our awareness. Perhaps he was trying on a new role when his words slurred. His voice roughened because he had to shout in his last play. Diminished muscles in his hands could be the result of too much writing or typing. Weight loss reflected poor eating habits. Nothing more.

As the symptoms grew more pronounced, I hoped for multiple sclerosis or a brain tumor and wondered about my sanity. Ben's voice grew more ragged. Lifting a glass of water took effort. His head moved at strange angles when he ate. His gait changed. His arms hung limp at his sides.

The final and irrevocable diagnosis shattered any belief I had that we'd escaped catastrophe. Plunged into the monstrous ALS nightmare, I pulled on my hiking boots and pounded the hundred acres we lived on while Steve cleared three acres of brush in two hours. The crash of timber competed with my screams. The tractor chewed up our illusions along with branches and dried grass.

With the internet as his assistant and a sense of urgency at his back, Ben's father Steve, applied all his time and energy towards finding a cure, scouring web sites in search of the best neurologists and the most current research efforts. He registered with countless forums and spent dozens of hours conversing with other PALS and their families.

Ben began filming his award winning documentary film “INDESTRUCTIBLE” in May 2003, determined to put a true face on the neurological disease that has remained elusive for more than 150 years. Through 'Indestructible', Ben created a powerful voice. Having won many awards, it continues to be shown in theaters, hospitals, universities, film festivals and is available for home purchase.

Stephen and I remain committed to creating multi-faceted support for the ALS community. Ben's sister, Rebeccah Rush, producer and distributor of “Indestructible” works diligently to bring this film to the forefront of world consciousness. What began as Ben's desire to find meaning for his life and a father's wish to save his son has evolved into a vital and purposeful paradigm shift for the ALS world.

Ben died on July 3, 2008, as he sought a new treatment and filmed his last minutes. Our commitment to Ben's valiant efforts will continue until a cure for ALS is found.