My name is Marie Schindlbeck Pierce. I founded our ALS (amyotrophic lateral sclerosis) group TEAM T.O.M. with my six siblings in 2013 after the loss of our brother, Tom Schindlbeck, to ALS, or Lou Gehrig’s disease. ALS is a progressive, fatal neuromuscular disorder that occurs when motor nerve cells cease to function and die. Although a person’s mind remains sharp and alert, voluntary muscle control becomes completely lost, often resulting in paralysis. Individuals with ALS essentially become trapped inside their own bodies, aware of the world around them, but unable to respond to it. When persons with ALS lose the ability to walk, move their arms, talk and even breathe, the disease requires them to rely on caregivers, usually their families, to provide the care and assistance that is needed to perform normal daily living activities. In most cases, in the later stages of the disease, ALS patients have a need for continuous care, 24 hours a day, seven days a week. The average life expectancy is from two to five years.
We learned about Tom’s diagnosis in June 2011.
We learned about the Walk to Defeat ALS that has been held at Cantigny Park in Wheaton for 12 years. We have been a part of that walk and this year will be the sixth year that TEAM T.O.M. participates. We’ve raised money every year to support research and patient care.
We have held a family-friendly and affordable fundraiser for the past four years. This will be our fifth and final. We invite friends and family and any other interested persons to join us from 5 p.m. to 7:30 p.m. Thursday, April 26 at Luigi’s Pizza and Fun Center, 732 Prairie Street in Aurora. As in past years, we offer a pizza and pasta all you can eat buffet. Entrance to the fundraiser is $8. for adults and $5. for children, two to 12. It includes dinner and the chance to purchase raffle tickets, 50/50 tickets and to bid on silent auction items.
Final fundraiser? Yes, although we will continue to raise money for the ALS Greater Chicago chapter through other means, this is our final big bash. We made a promise to Tom to carry on his fight and I know he would be so proud of our efforts and success over the past five years since he died in 2013. It has been a journey of emotions, some painful and some joyful, as we spread the word about ALS research and the advancements that are being made. Two of us, our sister Janet Dellorto and I, became ambassadors for the Chicago chapter three years ago. We can speak to any interested groups about ALS. We volunteer many times during the year at events sponsored by the Association and all four of us sisters, Jean, Joyce, Janet, and Marie, volunteer at many fundraising events during the year. That’s our way of paying forward. That’s our way of honoring Tom’s memory.
With no regrets as we end a great five-year fundraising goal, we thank everyone who has joined our efforts to inform and share what we painfully learned though Tom’s battle. We became members of a club we never asked to join when we became another family who lost a loved one much too early in their life. We learned other life lessons from Tom. He taught us how to live every moment, he taught us about love and courage and dignity. He taught us that “it is what it is” and that you have a choice in how you live with and react to a disease that wins the battle every time. Mostly, he reminded us that life is short and love of family is the most important gift we can share with each other. Family…biological or grown in the heart…that’s what ALS does to people. We all get it, we all suffer the same, we all share the same fears and losses, we all share the same despair and heartaches, with tears in our eyes we all recognize each other. We are a family. Hoping to see all of you April 26.
—Marie Schindlbeck Pierce
