Amid progress in fight against ALS, there's plenty of work ahead

My husband and I had just celebrated 20 years of marriage when we heard the words, “You have ALS.” As the pain and heartache of those words slowly sank in, we realized that his life, my life and our children’s lives would be forever changed by amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

My husband retired early to focus on his health and goals, and to plan for what was next, after being told that the average life expectancy is two to five years from diagnosis. I continued to work while becoming his full-time caregiver, learning how to use medical equipment I’d never heard of or seen before. Our teenage children continued to excel in school, knowing their father would not be able to attend their activities or high school graduations. They too became caregivers at too young an age.

The family carried on with as much normalcy as we could. In the years that followed, the ALS clinic and hospice teams worked in tandem to support us every step of the way. Family and friends rallied for us, offering steady help and strength. My husband died six years after his diagnosis, leaving behind his soulmate and children. That tragedy gave way to grief and heartache. From that pain, advocacy began to rise, becoming fuel for change. Progress is real. But for those living with ALS today, progress must move faster.

As a lifetime Illinois resident in the northern Chicago suburbs, I know Illinoisans pride themselves on showing up: for our teams, neighbors and causes that demand courage. That spirit is visible every year on June 2, Lou Gehrig Day, when our ballparks pause to honor the legacy of Lou Gehrig and the families living with ALS.

Awareness is rising through major and minor league sports, awareness walks and passionate advocates — both celebrities and everyday voices. Actor Eric Dane, who died of ALS on Feb. 19, was a fierce advocate, generous spirit and true champion in the movement to end ALS. He brought humility, humor and visibility to ALS, reminding the world that progress is possible when we use our voice.

Funding conversations are louder. In early February, Congress passed a budget that included $315 million for ALS research, the most funding ever for ALS. But for the thousands of families still facing an ALS diagnosis without a cure, progress, while real, is not yet enough.

The increase in momentum around ALS is happening because advocates, neurologists, researchers and clinicians have worked tirelessly to move the disease from being ignored to having increased political agency. Grassroots organizations like I AM ALS are part of the “Push for Progress,” a bold three-year campaign raising money to accelerate ALS research, expand access to promising therapies and secure more than $1 billion in critical federal funding for ALS research.

For decades, federal funding for ALS research was flat. I AM ALS secured more than $1.6 billion for ALS in six years by disrupting the status quo and harnessing the grit, urgency and energy of the ALS community movement. Progress equals louder voices, broader coalitions and growing bipartisan recognition that ALS demands urgent action.

The Accelerating Access to Critical Therapies for ALS Act, known as ACT for ALS, is up for reauthorization this year, expiring in September, and we urgently need our congressional leaders to support and fully fund this bill. The reauthorization will ensure expanded access to promising treatments for people who previously had none, generate critical data to accelerate breakthroughs for everyone living with ALS, and build a coordinated national research infrastructure designed to deliver cures.

Reauthorizing this legislation is the No. 1 priority of the ALS community. Illinois residents can help ensure this bill passes by writing to members of Congress. You can use an email template that only requires your signature. That template can be found on the I AM ALS website. If we do not act now, we stand to lose $500 million, the expanded access program and the vital research infrastructure it supports. Failure is not an option.

Kelly Goodman, of Lindenhurst, is a community outreach team co-chair and co-manager for the library campaign and book club for I AM ALS. She is also a member of the support services committee for the Les Turner ALS Foundation.