Can you ‘Walk to Defeat ALS’?
On July 4, 1939 at Yankee Stadium, baseball legend Lou Gehrig delivered this heartbreaking and inspirational message as his teammates, fans, friends and family looked on and wept, “Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth. I might have had a bad break, but I’ve got an awful lot to live for.”
Well, I’m not a man, and I don’t play baseball, but I do feel like I am the luckiest woman on the face of this earth. What Lou and I have in common is amyotrophic lateral sclerosis, ALS, also known as Lou Gehrig’s Disease. There’s a joke in ALS circles that says something about how ironic it is that this heroic man got a cruel, terminal illness called Lou Gehrig’s Disease. I also find humor in serious situations as often as possible.
In keeping with the baseball theme, like hitting a home run or getting four balls and a walk, I’m inviting all to join me at the Walk to Defeat ALS on Saturday, Oct. 1, at Raley Field in West Sacramento from roughly 9 a.m. to 1 p.m. If you join our team, The Specktaculars, whether you can donate or not, you’ve already hit a home run. You don’t have to walk — you can roll. To donate and/or join the team, use this link: http://web.alsa.org/goto/cspeck
The actual Walk begins at 11 a.m. but the event starts at 9 a.m. with registration, free coffee, fruit and pastries, entertainment, face painting, live music, games and prizes. If you can’t find our team “hang-out area,” text me at 310-508-7401. Our team is usually easy to spot because of the large number of junior high and high school students, and bouquets of bright yellow smiley face helium balloons . And it’s pretty hard to miss me in my “parade-float-like” trike and bright orange cowboy hat. Sorry, no baseball cap for me.
ALS is a fatal progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which includes muscles of the respiratory system. Over 90 percent of deaths come from respiratory failure. ALS usually strikes people between the ages of 40 and 70, and approximately 20,000 Americans can have the disease at any given time (although this number fluctuates). For unknown reasons, military veterans are approximately twice as likely to be diagnosed with the disease than the general public.
About 90 percent of ALS cases are sporadic — it occurs throughout the world with no racial, ethnic, orsocioeconomic boundaries. Approximately 10 percent of the occurrences are familial: FALS. FALS folks are born with a genetic mutation that eventually leads to ALS if something else doesn’t kill them first. With FALS , a parent who has a genetic mutation that causes ALS has a 50 percent chance of passing that mutation to each of his or her children. Both men and women are equally likely to inherit the genetic mutation.
ALS has already killed four of my family members. Some members of our family (like me) inherited the genetic mutation from our mom’s lineage that leads to ALS. My mom died when she was 52, and I had just turned 13. Her Aunt Mary died of it at age 54. My brother Larry died in 2008, and brother Paul died in 2011. Our SOD1 genetic mutation of ALS happens in only 2 percent of all ALS cases. I’ve been living with ALS for almost seven years, and I was also diagnosed with metastatic neuroendocrine cancer in July 2014. I am still loving and living my life fully, and I’m the happiest I’ve ever been .
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 have with quality of life for five years and more. More than half of all patients live more than three years after diagnosis. About 20 percent of people with ALS live five years or more, and up to 10 percent will survive more than 10 years.
Those sentences are full of statistics, but we are not just numbers — we are people you know and love. Or maybe we’ve been neighbors for years or we played softball together in junior high school, or made out in high school. You never know.
Sadly, even though the ALS Ice bucket Challenge brought ALS out of the shadows and raised over $100 million for research and to help care for those living with the disease, a cure has not yet been found. There is, however, reason to be hopeful as there have been significant advances in ALS research during the last several years. Other significant aspects are the major change in the pharmaceutical industry and the drug development landscape.
Your participation in the Walk will make a difference in the lives of those affected by ALS. The money we raise will help The ALS Association support global research, assist people with ALS, fund multidisciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference. The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
We sincerely appreciate your help, so if you can’t join The Specktaculars, please consider making a donation to support my efforts. We need your support, so please do anything you can. I am so deeply grateful and I’ll be looking for you at the Walk if you can be there. Remember, it’s in River Cats Stadium — not Yankee Stadium.
I believe the Walk to Defeat ALS is the perfect avenue to channel the love and energies of family, friends and colleagues who are determined to help us find a cure. The Walk is once a year. It’s fun. It’s meaningful. And you can make new friends — folks who might change the way you look at life. And maybe you’ll discover why I really do feel like the luckiest woman on the face of this earth.
For more information, please email me, Cathy Speck at firstname.lastname@example.org or text 310-508-7401