axeALS Foundation offering grants to help families with financial needs

The axeALS Foundation is inviting people in the U.S. with amyotrophic lateral sclerosis (ALS) and demonstrable financial needs to apply for a grant to defray the cost of living with the progressive neurodegenerative disease.

The application deadline is midnight Aug. 15. Institutions may apply as well, although the granting timeline is by invitation and requirements may vary. For more information about the grant program, send an email to [email protected].

Grants will be awarded to up to two ALS families at the foundation’s charity golf tournament in Long Beach, California, on Nov. 6. Proceeds from that event support the organization’s efforts.

“We achieve this goal in part by giving grants to individuals who are burdened by the cost of living with ALS and through giving grants to institutions to further our mission,” the foundation states on the grant program’s webpage.

Each applicant — a guardian may apply on a patient’s behalf — must submit a personal statement that includes an explanation of their needs and financial state, supported by a breakdown of income and expenses.

According to the foundation, applicants must demonstrate “significant financial need.” However, applicants should not include specific bank account information or other confidential data. Follow-up interviews and documentation of financial need, however, may be requested.

While grant seekers can apply each cycle, previous grant recipients are ineligible.

To ascertain that grant funds are used appropriately, the foundation may require periodic progress reports — at least once annually — and, ultimately, a full report on grant activities. Grantees also are required to attend a foundation event, either in person or digitally.

The axeALS Foundation presented a grant check on June 12 to Mario Di Bella, diagnosed with ALS in 2021 at age 35, and his family. Previously a graduate degree student, Di Bella went from competitive weightlifting and skateboarding to needing help getting out of bed, using a wheelchair full time, and losing his ability to speak.

“Anyone who knows Mario, knows the big [and] impactful presence he brings to anyone who meets him — from his love, humor, laugh, hard work ethic, passion [and] desire to help others,” his wife, Jessica, states on a foundation grant webpage.

A 2020 survey of ALS patients in the U.S. and their caregivers, conducted by the ALS Association, found that paying for medical treatments and services, and accessing and understanding insurance coverage were among their leading stressors.

The axeALS Foundation was founded by Eric and Amanda Stevens after Eric, a former firefighter and football player for the St. Louis Rams, was diagnosed with ALS at age 29.