I AM ALS, Protected Tomorrows Launch Financial Planning Program for ALS Families

Rare Daily Staff

I AM ALS and financial advisory organization Protected Tomorrows have launched a nationwide virtual program to help people living with ALS and their caregivers navigate benefits, insurance, and long-term financial planning as families face rising care costs and lost income.

The ALS Financial Wellness Program, which began October 13, combines financial counseling from Protected Tomorrows, part of Simplicity Group, with social work and peer-support services from the nonprofit patient advocacy organization I AM ALS. The program provides specialized guidance rather than direct financial assistance.

Protected Tomorrows’ advisors will help families make decisions about Social Security disability benefits, Medicare timing, insurance coverage, retirement and estate planning, financing home modifications, and protecting caregivers’ income. I AM ALS’s licensed social workers and trained peer-support specialists will help with related needs, including emotional support, care options, clinical trials, expanded access programs, and assistive technology. Families can contact either organization to connect with both services.

The launch follows a 2024 I AM ALS survey of 1,000 patients and caregivers in which financial burden was the most commonly reported challenge. According to Andrea Goodman, the organization’s CEO, 68 percent of respondents living with ALS and 74 percent of caregiver respondents identified financial burden as a challenge.

“Families shouldn’t have to figure out benefits, insurance, and long-term costs alone in the middle of the worst and most complicated period of their lives, and on top of everything else the disease takes,” Goodman said.

The organizations said the program is intended to reach families early, before financial problems become a crisis. In announcing the initiative, they cited research estimating the cost of ALS care at $1.43 million over the course of the disease. They also said that within 20 months, only about 15 percent of people who were working at diagnosis remain employed. The announcement did not identify the studies underlying those estimates.

Protected Tomorrows specializes in helping families of people with disabilities navigate government benefits, future care needs, and financial planning. Its founder, Mary Anne Ehlert, said the partnership would extend that expertise to people affected by ALS.

“Partnering with I AM ALS allows us to deliver specialized, compassionate guidance directly to those who need it most, allowing families to plan for the future with confidence,” Ehlert said.

Photo: Andrea Goodman, CEO of I AM ALS.