Jacqueline Stepp’s Story

My name is Jacqueline Stepp, and unfortunately, my family has familial ALS. We’ve lost three family members to ALS, my mother is currently battling it, and I carry the C9orf72 gene myself.

ALS impacts more than just your physical body. It impacts your finances, your relationships, futures, and the emotional architecture of entire families. When my mom was diagnosed, I quickly realized how isolating this disease can be, especially for those in smaller communities.

I live about 15 minutes outside of Chattanooga, Tennessee. I always believed our city had a strong network of support for people facing difficult circumstances. We have numerous walks and 5Ks for charities, and I assumed there would be something similar that supported ALS.

Except there wasn’t. Anything.

The ALS Clinic at Erlanger Hospital supports around 80 ALS families across Southeast Tennessee and Northwest Georgia, already operating about 30 families beyond its intended capacity. Yet there is little funding available for things families urgently need, such as communication devices, home ramps, accessible vehicles, or caregiver support. The clinic does run a loan closet, which significantly helped my mom, but it is not always stocked.

I was shocked to learn that Chattanooga has not hosted a dedicated in-person ALS awareness walk in over a decade. Since the Ice Bucket Challenge captured the world’s attention, families here have largely been navigating appointments, equipment needs, and anticipatory grief on their own.

So I asked myself: what could I do as one person?

At first, the idea was small. I wanted to use storytelling to raise awareness. I had been drafting a novel for some time, so I committed to donating at least 10 percent of the book’s sales to ALS initiatives once it is published. I knew that alone would not bring immediate or direct action to the region, but it felt like a place to start.

I kept returning to a quote I have long admired: “If not you, then who? If not now, when?”

If a need must be addressed, who else could I rely on to rise to the challenge?

So I decided to found Rise for ALS Chattanooga, Inc.

I started Rise for ALS because I believe no family should have to face this disease alone.

As a woman, a mother, and a gene carrier, I could live in the space between grief and fear of the future, or I could take action. I cannot control what the future holds for my own health, but I can build something now.

Rise for ALS is a registered 501(c)(3) nonprofit working to create community-centered awareness in our region, raise funds for ALS research, and provide direct local support so that families feel seen, supported, and able to access the resources they need.

On May 2, 2026, we are bringing the first ALS Awareness Walk to Chattanooga in over a decade. It may begin as a small event, but it is a beginning.

I am also publishing an ALS anthology, a collection of voices from across the ALS community. We have already received more than 35 stories, poems, and letters. One hundred percent of the proceeds will go to Target ALS. For me, art and advocacy are not separate. They are braided together. If I am going to tell stories, they will help fund hope.

Last weekend, we took my mom to Tybee Island. She sat in a bright yellow beach wheelchair under the sun, the wind coming off the ocean, laughing with us. ALS has taken much from her body, but it has not taken her joy.

Moments like that are why this work matters.

Accessibility matters. Community matters. Love matters.

As a woman, a mother, a daughter, and a gene carrier, I refuse to live only in fear of what may come. I will use my voice for as long as I have it.

This Women’s History Month, I honor the thousands of daughters, wives, mothers, and sisters holding their families together through ALS.

We are not invisible.

We rise together.

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