By Cathy Speck
I’m asking our tax-paying community members to make a gift of $25 or more on line 414-ALS/Lou Gehrig Disease Research Fund of your California tax return. If the ALS Association doesn’t raise a minimum of $250,000 this year, we will lose our place on the tax form forever. Preserving line 414 will help to build more awareness throughout California every year!
ALS (Lou Gehrig’s disease) is a fatal neurodegenerative disease that occurs throughout the world, with no racial, ethnic or socioeconomic boundaries. It is not contagious, and there is no cure.
Approximately 90 percent of ALS cases are sporadic, meaning it can happen to anyone at any time, or place. The remaining 10 percent have familial ALS, which is defined as two or more people in the immediate family having ALS. Within the familial cases, a small number are caused by genetic mutations that are present at birth, The SOD1 mutation that is impacting my family counts for only 2 percent of all ALS cases. We are a rare family indeed.
I have the SOD1 mutation that also killed my mom, Dorothy, and older brothers Paul and Larry Speck. The remainder of my siblings — Barb, Peggy, Jim and Mary — each have a 50 percent chance of inheriting the mutation. All children born from a parent who has the SOD1 mutation are at the same 50 percent risk. The percentages to not decrease as the generations continue.
Approximately 5,600 people in the United States are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time. Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable, and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
There is no cure. But now is the most important time to raise awareness about this opportunity as most people file their tax returns just before April 15. Your efforts will be giving hope to hundreds of thousands of people impacted by this disease. Every day, people being diagnosed and others are losing their battle. Having line 414 on the California tax return allows every donation, large or small, to make a difference in finding treatments and, eventually, a cure for ALS.
This is a battle that the ALS community cannot win alone. We need to recruit every California taxpayer to help us in the fight against Lou Gehrig’s disease!
The onset of ALS is insidious, with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing, generally follows. Almost 90 percent of ALS patients die of respiratory failure,
More information about the ALS tax check-off is at www.alsa.org. Please make your own gift of $25 or more on line 414-ALS/Lou Gehrig Disease Research Fund of your California tax return.
But that’s not all! We’ll be skydiving to benefit ALS research on Sunday, May 5, at SkyDance SkyDiving at the Yolo County Airport northwest of Davis. Learn more about the fun-filled fourth annual Skydiving Specktackular at www.cathydyingasliving.com or email me at [email protected].
— Cathy Speck is a longtime Davis resident who continues to draw on her fighting spirit to battle ALS.