When Scott Lato was diagnosed with ALS on March 29 of last year, it wasn’t long before he and his family realized that certain aspects of their home had become very limiting to him—and provided additional challenges for his caregivers—as his ALS symptoms continued to progress. However, with three boys at home aged 9, 11, and 18, he and his wife Bernadette, both in their 40s, didn’t have the financial ability to suddenly transform their house.
For many families living with ALS, this situation is all too familiar. ALS does not only devastate an individual physically, it can quickly overwhelm a family financially. But would the Latos really have to choose between financial stability for their family and Scott’s ability to access basic needs in his own home?
Thanks to Jane’s Angel Fund, they did not.
This emergency-assistance fund seeks to reduce the financial burden of ALS for those with the disease and their families. It provides financial assistance and grants for expenses that are not traditionally covered by private insurance, Medicare, Medicaid, and emergency needs not covered by these and other assistance programs.
During these uncertain times we are all living through right now, Jane’s Angel Fund may be of use to many facing the challenges of ALS. As such, the ALS Association St. Louis Regional Chapter has decided to direct all funds raised for Give STL Day to support Jane’s Angel Fund.
The Lato family received several grants through this fund, which significantly aided in their ability to fund the major modifications their home required for Scott’s quality of life, including reconstruction of the bedroom and bathroom, building a concrete ramp into their home, and installing a stair lift to get to their basement.
“This has definitely allowed us to maintain the standard of living that we had before as well as continued freedom and mobility for Scott,” says Bernadette, “Allowing him to feel that continued freedom and sense of mobility is so important to keep his spirits up.”
Bernadette is deeply grateful for the support she and Scott received with this project. “The ability to have a resource like Jane’s Angel Fund is phenomenal,” she says, “As a family of five, not having all of this money laying around to pay for something that overnight changes your life, it’s been a godsend.”
Since Jane’s Angel Fund was launched last year, the Latos are one of 47 families who have utilized this local grant program to help alleviate their financial needs brought on by ALS. Founded by Mark Calmes in cooperation with the St. Louis Regional Chapter and in memory of his wife Jane, the fund has provided over $62,000 to families facing ALS.
Jane Calmes, Mark’s late wife, battled ALS for eight years before she passed away in 2017. “Every day she amazed me,” Mark wrote on the ALS Association website, “Especially with the courage she exhibited dealing with disease and the compassion she showed our family and others during her journey.”
Jane’s compassion lives on in the relief provided in her memory. In addition to funding home modifications, Jane’s Angel Fund helps alleviate financial burdens of ALS by helping with things such as transportation, adaptive equipment, caregiver relief, and medical reimbursements. With COVID-19 causing a wide variety of disruptions to the lives of so many, this fund also covers some of the most pressing and specialized developing needs of our ALS community, including respite care, telecare, and personal hygiene items.
These are challenging and uncertain times, but we remain as committed as ever to serving people with ALS, who face both new and existing hardships. As we look toward the future, it is with the knowledge that, despite social distancing, we have grown closer as a community. We are all in this together, and that compassion will see us through.
Next Thursday, our community will come together for Give STL Day, a day of online giving that shines a spotlight on local nonprofits and the good work they do to make the St. Louis region a better place to live for everyone. The work of our Chapter and support offered through Jane’s Angel Fund is part of that effort. We hope you will consider a donation on Give STL Day—or before—to help us make a difference in the lives of families living with ALS. Click here to learn more and help us reach our goal.