1). My partner Randy Pipkin died at 42 of ALS, after fighting nine years to survive this horrible disease. He was 5`11" and 92lbs when he died. For the last two years, he was completely trapped in his body.
2). ALS is referred to as an "orphan disease," meaning people don't know what it is (unlike cancer and heart disease). That equates to a disease that's underfunded and under-researched.
3). ALS allows your mind to remain vibrant but systematically takes away every other part of your bodily functions, so it's literally like being buried alive.
4). ALS destroys families, lives, careers and hope.
5). More than 30,000 people live with the disease each day with no real hope for a cure.
6). ALS does not discriminate; it can affect the young, old, rich and poor.
7). Starting with a finger twitch or a weak hand, ALS can strike without warning and change the rest of your life in an instant.
8). ALS kills motor neurons, the messengers between the brain and the rest of your body, so once it attacks there is no going back.
9). Doctors and scientists are honing on promising therapies like gene silencing and STEM cell. Yet, they desparately need more funding.
10). No person should ever experience the horror that is ALS. The ALS #icebucketchallenge has raised more than $2 million (and counting) for non-profits like the ALS Association. This funding is needed to find a cure and to help care for those fighting the disease.
So, please don't complain. Just get a bucket. Put some ice and water in it. Pour it over your head and donate to your ALS charity of choice. We all thank you!
Mark Malinowski is a cause-marketing executive and continues the fight against ALS begun by his partner Randy Pipkin. He has formed "Team Randy" in support of this fall's Boston Walk to Defeat ALS.