Join TEAM HARRY & Raise a Middle Finger to ALS!

OUR STORY: I never expected to share the news of my husband being diagnosed with a terminal illness online. I did not feel it was appropriate to ask for help through social media; however, his care and comfort were my priority, and the expected out-of-pocket expenses are estimated at around $200,000, not accounting for home health care, which also is not covered by insurance. This is our story of his diagnosis and battle from March 2023 – September 2024, with Amyotrophic Lateral Sclerosis, also known as ALS (or Lou Gehrig's Disease).

Every day for 18 months, Harry has woken in the morning, and raised his middle finger to ALS, always saying, “One day, ALS will win, but not today!” Unfortunately, ALS did win as Harry passed away peacefully on September 1, 2024, surrounded by family and friends. Harry donated his brain and spinal cord to the Live Like Lou Center for ALS Research at the University of Pittsburgh Brain Institute and the University of Pittsburgh Department of Neurology’s ALS Program. He wanted his struggle to contribute to understanding the underlying causes of ALS and other neurodegenerative diseases.

LIVING WITH ALS: ALS is a terrible disease, robbing people of every independence as every voluntary muscle in the body dies. You lose mobility. You lose the ability to eat and drink by mouth, talk, and communicate with facial expressions. Self-care is maintained by others, sacrificing dignity. Confinement by a wheelchair results in a sudden need for special vans, ramps, home modifications (all at your own expense), as well as several large, cumbersome lifts to transport you from the chair to other needs, such as in bed, to take a shower, to use the bathroom. Advanced communication devices are available to help you speak, and when you cannot use your fingers to press buttons, you can spell with your eyes, as that is one of only a couple of functions not affected by ALS. Once you have the necessary equipment to adjust to the daily changes, you need help. Amazingly, home health care is not covered by insurance. Depending on the rate of decline, expenses quickly add up -- of course, you do not have a choice but to absorb the cost.

OUR ASK: We hope you can join TEAM HARRY, whether by donating or sharing our story and needs. Every day he bravely fought back with a dry sense of humor and amazing determination. His family and friends provided every available opportunity to make sure his comfort and quality of life was the priority. He had the vision to create personal video messages a year ago, before he lost his voice – something we will cherish forever. He chose to host his own wake, before his death, as he believed we should all laugh while he is on this earth, not cry when he is not. Your kindness will help defray the enormous expenses the family accumulated during this short and heartbreaking battle with ALS. Please keep us in your thoughts and prayers.