Our Story

When a Voice Is Taken, a Story Must Be Told

ALS does not only weaken muscles.
It steals voices.
It traps brilliant minds inside bodies that can no longer respond.

This is the story of Aida, my cousin: a woman whose voice once filled rooms with laughter, ideas, and love, and whose words now live through those of us who refuse to let her be forgotten.

Aida lives outside the United States. She is a devoted wife, a loving mother, and a generous sister, and was a highly accomplished professional. She loved life deeply: traveling, laughing, sharing moments, living fully and unapologetically. She was
dynamic, expressive, and intensely present in the lives of those who loved her.

In late 2021, at just 48 years old, Aida was diagnosed with ALS, bulbar onset. The diagnosis landed like an earthquake. For Aida, it felt as though time stopped and life suddenly divided into before and after. The future, once full of movement and plans, became frighteningly uncertain.

In March 2022, Aida’s husband reached out to my husband, Dr. Nizar Souayah, seeking clarity. He wanted to understand the disease: its progression, available treatments, ongoing research, and whether there were any medical updates or breakthroughs that
could offer hope.

Dr. Souayah has spent years working with patients affected by ALS and other complex neuromuscular diseases. His work spans clinical care, research, and health systems innovation, with a focus on conditions where time is not a luxury patients have. He understood immediately that this was not only a medical emergency, but a human one.

When my husband shared the news with me, I felt empty. As her cousin, I didn’t know how to help. I didn’t know what words could possibly matter in the face of such a diagnosis.

My husband’s advice was simple and profound: “Talk to her. Stay connected. Share your daily life. Most importantly, make sure she never feels she is fighting this alone.”

That is how my conversations with Aida began in April 2022.

For someone not living with a neurodegenerative disease, it is hard to understand how powerful small gestures can be.

A simple “How are you today?”
A joke.
A story from daily life.
A book recommendation.
A series watched and shared.
A reminder: I’m here if you want to talk.

For my cousin, these messages were not small. They were lifelines.

In one of her messages, she wrote: “You are offering me a chance to feel more and more surrounded by people I love.”

But love, as powerful as it is, cannot stop the progression of ALS.

Even from miles away, I could see the disease advancing week by week, message by message. One week she spoke of stiffness. The next, of weakness. Soon after, of how her speech was almost completely gone. Months later, she shared that she had begun
using a wheelchair.

Her messages grew shorter. Writing became exhausting. Her hands no longer obeyed her. Eventually, her connection to the outside world depended on a single finger.

That brilliant, intelligent, loving woman, so full of movement and expression, became trapped inside her own body.

One sentence she wrote has stayed with me: “Maybe one day there will be a magical medicine for my case.”
That sentence refuses to let us look away.

It is the reason we fight. Not only for Aida, my cousin, but for the thousands like her. For all the beautiful minds imprisoned by a disease that medicine has not yet outrun.

This is why advancing ALS research matters. This is why the mission of the ALS Institute of New Jersey is urgent: to accelerate scientific discovery, support patients and families, and push relentlessly toward treatments that do not yet exist, but must.

Through clinical insight, research, advocacy, and human connection, Dr. Souayah’s work aligns with this mission; bridging science and compassion, and refusing to accept silence as an endpoint.

Aida’s voice was taken by this disease, but her story will not be.

Until science catches up with hope, we will continue to speak for her, and for all those still waiting for that “magical medicine” to become real.

“When ALS takes a voice, research must answer. Until it does, we will speak, act, and push science forward together.”
Sonia Souayah
Aida’s cousin | ALS Research Advocate
ALS Institute of New Jersey