What is This Tribute Fund About?

My name is Carol Story.  When I talk to people about how my husband Gene died, the reactions I get fall into three general categories. 

Most common is simple condolences and compassion, because they know enough about the disease to imagine how difficult it was for both Gene and me during his final months. This is Category 1.

Initially it surprised me how frequently I got the second reaction.  These people all know of someone who has or had ALS.  They offer condolences and compassion, but I can tell that the emotions are more deeply felt by these friends and acquaintances who have been personally affected by the disease. This is Category 2.

It continues to surprise me how often I get the third reaction. Until I talked to them about it, these people knew nothing about ALS.  Some had never even heard of Lou Gehrig’s disease!  This is Category 3.  Now, of course, they all fall into Category 2.

My hopes in helping to raise funds for the ALS Association is threefold, to address each type of reaction.

My immediate hope is to reduce the number of people in Category 3 and make more people aware of this dreadful disease.  

My long-term hope is to reduce the number of people in Category 2.  Too many of us have personal experience with ALS.  Part of the ALS Association’s mission is to lead the fight to cure and treat ALS through global, cutting-edge research.  It was Gene’s wish that we continue to support this important mission.

Finally, my friends in Category 1 will appreciate the ALS Association’s mission to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.  I can personally attest to the value this support afforded to both Gene and me.

Gene's Story

For those of you who don't know, in 1998, Gene's mother died from ALS.  Just over seven years later, Gene noticed his own first symptoms:  slurred speech, muscle tics and a growing weakness in his right hand.  Having seen his mother die from the disease, he recognized the symptoms.  He was officially diagnosed in July of 2006 and deteriorated so rapidly that a mere nine months later, in April of 2007, he passed away from ALS.  

During the course of his disease, I saw my active, energetic, vibrant, self-confident husband decline almost daily.  First he had trouble speaking and his muscles started to twitch.  Right-handed, he began to lose strength and dexterity in his right hand.  His foot started to "drop"; he tripped over his foot and broke his wrist.  He had to stop riding his motorcycle, then driving his boat, then driving his cars.  He went from walking with a cane to a walker to not being able to support himself enough to stand, even when assisted.  He bravely accepted each inevitable decline with grace, but each one took something more out of him.  By the end, he was bed-ridden, couldn't speak, and could move only his head and his hands, marginally.  He could no longer communicate in any meaningful way - not even with me.  I cannot think of a worse way to die.  And the worst part was, he knew what was coming; he'd seen his mother die the same way.

To honor Gene's memory, I planted a bed of beautiful red tulips that Gene picked for that purpose.  And I established this Tribute Fund to honor both Gene and his mother, Mary.

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