Help to Cover ALS Care Costs for John Mariani

In August of 2021, John Mariani—our beloved family member, community leader, and world-class mensch—was diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease). ALS is a progressive and ultimately terminal neuromuscular condition that is diagnosed in less than 10 out of every 100000 adults each year. John’s case is also sporadic, meaning that his diagnosis was completely random and unexpected. He was almost completely independent at the time of his diagnosis; less than two years later, systemic symptoms ranging from complete loss of motor function in his legs to severe hand tremors and speech difficulties have required both new assistive devices (such as a wheelchair) and the help of his family to perform most other activities of daily life. He will eventually lose the ability to move any part of his body. After trying to manage countless doctors’ appointments, insurance debacles, counseling, research, and scrounging for resources all on our own, we are writing to you as John’s loving wife and two children in the hopes that our community can support us.

John has dedicated his life to giving. From taking on roles as a teacher, social worker, stage manager, and volunteer in his working years to becoming a wildlife conservationist, social and environmental activist, tutor, and community organizer in his “retirement,” the truth is that his altruism makes even the term ‘mensch’ feel fundamentally insufficient. Some of his many mitzvot include spearheading social justice initiatives with RAC-IL, Go Green, Faith in Place, and numerous other community partners; stage managing family and children’s productions with the Buffalo Grove Park District; and advocating for social, legal and financial equity for his clients as a social worker for over 25 years. One of the most difficult parts of this journey for us has been reconciling the arbitrariness of this diagnosis with all of the good he’s done.

ALS is one of the most expensive health conditions in the world, and navigating the wide-ranging financial implications of such a rare disease is very stressful for ALS caregivers. Even more pervasive than financial stress has been the broader mental health burden of a terminal diagnosis in the family. The four of us have had to constantly adapt to John’s evolving needs throughout the course of his illness while also juggling the ups and downs of daily life.

Yet even in the midst of Covid, his father’s passing in March, health concerns of relatives, and yet another death in our extended family just a week ago, John has (in his typical fashion) continued to be a prominent leader at our local synagogue, Or Shalom, and a loving family man through it all. The ways we’ve given back to him with caregiving and arranging get-togethers of loved ones have truly felt like pennies in comparison to the wealth of love and compassion he has shown us for as long as we’ve known him.

We are facing many direct costs related to ALS, including (but not limited to) medical testing, copays, medications, and at-home care. Then there are the indirect costs: travel expenses, home renovations, loss of income due to caregiving, and more. Please join us in honoring John by donating any amount you can. But the effects of this disease go far beyond the financial. ALS is a complex and physically exhausting disease, so making plans ahead of time to visit John at home is a great way to connect. You can sign up to help maintain our home garden (that the three of us, despite our best intentions, are not so skilled at doing), set up a time to drop by our house for lunch, bring your pet and hang out, support his work at Or Shalom, or anything else. We’re endlessly grateful for any contribution you have the capacity to make.