Generosity pours in for Long Island ALS families fighting ‘bankruptcy disease’

ALS doesn’t just destroy the body. It drains bank accounts, college funds, retirement savings, and any other financial cushion you can imagine.

In medical circles, the disease has earned a grim nickname: the “bankruptcy disease.” Between round-the-clock nursing care, specialized equipment, home modifications and experimental treatments, the costs pile up faster than any insurance policy can cover.

Right now, families across Long Island are living that reality in real time.

In Islip Terrace, a homeschool mom who built a community around her kitchen table is fighting the disease. In Rockville Centre, a beloved school teacher was forced into early retirement. In Massapequa Park, a young woman studying to become a nurse has instead become a full-time caregiver for her mother.

In Shirley, a man is gradually losing his ability to speak and eat. And in Port Washington, a Navy veteran with five children is facing the same devastating progression.

Combined, family, friends and strangers have raised more than $133,000 for the five Long Islanders via GoFundMe campaigns. It’s a number that for some could be the difference between dying at home surrounded by loved ones or in a facility because the money ran out.

The Centers for Disease Control and Prevention projects ALS cases will jump in the U.S. from nearly 33,000 in 2022 to over 36,000 by 2030 — a 10 percent increase, with cases among those 66 and older expected to spike 25 percent.

That’s thousands more families facing the same devastating math. May is ALS Awareness Month, and the recent death of actor Eric Dane at 53 has brought renewed attention to just how brutal this disease is, not only physically but financially.

For the families living through the disease, ALS becomes an every-day battle measured not just in symptoms and decline, but in invoices, insurance denials and impossible financial choices.

Her home has become a gathering place for families through her homeschool co-op, where she teaches classes in baking, farming and and a bevy of other practical life skills that her learners will carry with them the rest of their lives.

Martin’s kitchen and farm have become classrooms where kids learn to knead dough, tend to animals, and understand where food comes from.

For the families who bring their children to learn from Martin, she represents more than just an educator. She is a mentor, a friend and someone who has given freely of her time and knowledge.

The connections forged in her home go beyond academics; they are friendships and memories that have shaped an entire community of homeschooling families.

Martin recently received devastating news that has upended everything she has built. Diagnosed with ALS, her future has become suddenly lined with uncertainty.

As Martin continues to care for her family and pour love into her home, she and her husband now face an overwhelming reality of medical appointments, treatments and an unknown road ahead.

The GoFundMe fundraiser organized by friend Viktoria Hermann for Martin and her family aims to cover medical care, supportive therapies and household expenses so that the woman’s family can focus on her care and time together.

Additionally, Vamos MMA is hosting a fundraiser on Martin’s behalf on June 6 at 2 p.m. Vamos MMA is located at 1708 Church St. in Holbrook. The event will feature a bounce house and face painting for children, as well as a stand-up comedian performance and a chance auction.

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But in February, at just 51, Saglembeni’s ALS diagnosis changed everything.

Saglembeni, a GoFundMe page started on his behalf, is a loving husband to Dana, his wife of 22 years, and an adventurous, fun-loving father to his three sons, Michael, Louis and Dominick.

His life has revolved around his family and his students.

Whether at the hockey rink, on the basketball court, or at Boy Scout events, Saglembeni has always been there for his boys, cheering them on and supporting their passions, Lisa Goodenough and Caryn Gugger wrote on the GoFundMe page they established.

ALS has attacked Saglembeni’s body with devastating speed, turning his body against itself.

Already, he’s been forced into retirement, as he navigates being robbed of his ability to move, speak and eat. As his need for around-the-clock care increases daily, his family is working tirelessly to renovate their home so he can remain with them, rather than go to a facility.

Marino’s son Caleb is graduating from college this May, while her daughter Ava is studying to become a nurse and has taken on a caregiver role for her mother.

Marino’s recent ALS diagnosis has transformed not just her life, but the lives of everyone who loves her. Her support system includes her husband Guy; her children; and her three sisters, Karen, Andrea and Linda; and her sisters’ husbands and children.

Already, Marino needs daily medical care, home health aides seven days a week, physical therapy and a constant arsenal of medical equipment and supplies.

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The bulbar form of ALS attacks the muscles that control speaking, eating and swallowing. The disease is already taking its toll on Lamirata, rapidly affecting his abilities to communicate and eat.

As Lamirata faces mounting expenses for medical care and daily support, the financial burden is compounding the emotional toll, Miskovsky details on the GoFundMe page.

For Lamirata, the disease demands constant attention, specialized equipment and modifications to daily life that insurance rarely covers in full.

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Following his military service, he built a career as a Studio Mechanic in the Shop Craft department with IATSE Local 52.

His recent ALS diagnosis has brought overwhelming physical and financial challenges to a man who has spent his life working with his hands and taking care of others.

ALS is attacking his body, forcing Weber and his family to confront a future filled with uncertainty, medical expenses, and the need for constant care.

The costs are mounting quickly: specialized medical care and equipment not covered by insurance, home modifications to ensure Weber’s safety, mobility, and independence, as well as essential support for his five children during this difficult transition.

Working in the entertainment industry, Weber gained a reputation as someone who is always the first to offer a hand to a fellow union member on set — someone who showed up for his brothers and sisters without hesitation.

_{Photos: courtesy of GoFundMe}