A Call for Stories: The Eldritch Shadow

Stories ALS Tried to Bury

To those living in the shadow of ALS/MND

ALS does not arrive quietly. It moves through bloodlines, households, and generations like something ancient and watching. Some of us know its name as C9orf72,SOD1, FUS or TARDBP. Others know it by different diagnoses or different timelines. Some of us only know it as a silence at the dinner table where someone used to laugh. But the shadow is shared.

I’m Jacqueline Stepp. I tested positive for the C9orf72 expansion, but this call is not only for those who carry a “stutter” in their code. Patients. Caregivers. Spouses. Children. Gene carriers. Those still waiting for answers. Those who have already said goodbye…If ALS has touched your life in any way, you belong here.

I believe stories are a form of resistance. ALS has haunted our families for generations. But a monster is only powerful while it stays in the dark.

I am inviting you to bring it into the light.

This anthology and global advocacy campaign aims to collect real voices from the ALS and FTD community, unfiltered, honest, and human. There is a profound lack of ALS narratives in literature. I intend to change that.

This has never been done at this scale before, and it will not be done without you.

What I Am Looking For
(These are prompts to spark reflection, not limitations. Share anything you feel compelled to)

I want your "unfiltered" truth. I am looking for personal narratives, poems, or letters that capture-

The Haunting
The moment you realized ALS or FTD had entered your life or your family. The first sign you could not unsee. The phone call. The test result. The shift in the room that no one could name yet. The day things changed forever.

The Strength
How you, or the person you love, have learned to live alongside this disease. What caregiving actually feels like at 2 a.m. What resilience looks like when the future feels unstable. What survival means now.

The Hope
For those who carry a gene expansion. The weight of anticipation. The math of generations. The question of “when” and “if.” What research, gene therapies, or the promise of tools like CRISPR represent to you. What a real cure would mean for your children, grandchildren, or the families still waiting for answers.

Submission Guidelines:

• Who Can Submit
  Anyone impacted by ALS or FTD; patients, caregivers, family members, gene carriers, clinicians, researchers, advocates.

• Format: Written stories (up to 2,000 words), poetry, or short video testimonials.

• Consent: Your story is yours. I will always seek your explicit approval before final publication.

• Anonymity: You may use your full name, a pseudonym, or remain anonymous. Your privacy and your family’s privacy will be respected.

The Impact:

Your voice will be published into a novel, and distributed for public readership worldwide, transforming our collective lived experiences into a cultural and historical record. My hope is that it will also help build a bridge between lived experience and scientific urgency.

One hundred percent of the proceeds from the resulting anthology will be donated directly to the Target ALS research fund. Target ALS works to break down barriers to ALS research by uniting scientists, industry, government, and the ALS community to accelerate the development of effective treatment.

We are not just telling stories. We are documenting a lineage. We are creating a record. We are refusing erasure. If ALS has marked your life, your voice matters here. This is about turning private grief into collective momentum, and a lived reality into pressure for a cure.

Let’s drag this monster into the light and write a future where it no longer survives.