Happy Birthday, Dad: Why I’m Fighting for ALS Research

My father would have been 82 today.

It’s hard to imagine what he’d be like now—what we’d talk about, what small things would still bring him joy. Maybe Ammar or Hasan would be sitting beside him, asking questions, handing him a birthday card they made. He would have seen Laila turn five years old, not five months old. And he would have met the newest addition to our family, Noora—just one week old.

But ALS took that away. It took away the way he moved, then the way he spoke, and finally, the time we thought we had.

This piece is for him.

It started with his walk.

Before the diagnosis, before the cough assist machines, before the wheelchair transfers, I remember watching my father’s steps become smaller and more tentative. At first, we chalked it up to age or fatigue. But within months, the uncertainty gave way to a diagnosis no one wanted: ALS.

We spent six years in that reality. My father, a former surgeon whose hands once stitched with precision, began losing control of those same fingers. Then his arms. Then his legs. His speech faded. His breath labored. But his mind? Sharp as ever.

He taught me how to be a caregiver, even as his body failed him.

An Unfolding Devastation

In a 2018 email, my sister Shirin noted that Dad rarely left the second floor. His feet dragged. He needed the cough assist machine twice a day, but often resisted it. Getting him to use it required coaxing, reminders, scheduling, patience.

The bathroom became a negotiation. Transferring to and from the bed, a multi-person task. My wife Syra and I learned to assist him into the car using a transfer device, and we monitored signs of swallowing issues that could lead to aspiration. Every small moment of dignity—using an electric toothbrush, managing his own pills, eating a meal without help—was a victory.

And when that dignity slipped, as it often did, it was grief in slow motion.

The Invisible Labor of ALS

My sisters’ emails and texts became our command center. Shirin and Asma helped track medication logs, lab results, and behavioral changes. I coordinated aide schedules, ventilator routines, daily routines, and follow-up appointments.

This wasn’t just care—it was a relentless, grinding, loving system. A system we held together as best we could. We were living out what the ALS Association calls “turning ALS from fatal to livable.” But the truth is: it’s only livable if the system holds.

If there are aides. If there is equipment. If there is research. If there is funding.

NIH Cuts Will Kill Momentum—and People

That’s why I’m writing this now, not just as a son, but as a mentor at I AM ALS and founder of GiveCare.

The proposed cuts to NIH research funding—particularly the standardization of indirect costs to 15%—threaten the progress that families like mine depend on. ALS research is largely funded by public dollars. The NIH invests over $200 million annually—not as a luxury, but as a lifeline.

The ALS Association has made clear: these cuts would derail trials, shutter labs, and stall progress on treatments that might slow or halt disease progression. For those living with ALS, that delay isn’t abstract—it’s fatal.

We must demand: No cuts to ALS research.
We must call our representatives.
We must share our stories.
We must remember that behind every acronym—NIH, ALS, RT, OT—is a person, a family, a future hanging in the balance.

What My Father Taught Me

I remember once, during a quiet afternoon, I helped my father into his chair. His face sunken, his arms barely functional, his voice faint. But he was breathing. He was home. He was loved.

He never asked for more than that.

But we should.

We should ask for more from our leaders. We should ask for a healthcare system that values caregivers and honors the labor we perform. We should ask for a research infrastructure that sees ALS not as a mystery but as a challenge worthy of solving.

My father didn’t get to see a cure. But I will not stop fighting for the families who still have a chance.

Happy birthday, Dad. I’m still fighting.
Ali Madad
Founder, GiveCare | Mentor, I AM ALS

Act now. Join the ALS Association’s campaign to stop the NIH cuts: als.org. Every call, every letter, every story matters.