The Dramatic Cure
02/17/2026
by Esther Labib-Kiyarash
I want the dramatic cure. To wake up one day free of the proverbial monkey on my back. The chaotic uncontrollable animal we call Parkinson’s Disease. Overtime I have evolved, adapted. What choice do I have? Above everything I am a Mom. My job is clear. To be their example. To show them that I can still be everything I was before: strong, independent, vulnerable yet confident, empathetic but not to be pitied, resilient and loving. Fearless. Their hero. A maternal rockstar. This is my mission.
Esther Labib-Kiyarash
I spent the first year of my diagnosis searching. Surely if I looked diligently I would find the magic potion, the long known cure that Big Pharma had been hiding from us. I flew all around the country, a fly on the wall, surrounded by the leading scientists in the field of all things Parkinson’s. Proteinopathy, mitochondrial dysfunction, calcium and iron dysregulation, vagus nerve, vibro tactile, lysosomes, proteomes, microglia. Macuna, vitamins, supplements all the things. Then I would fly home and wake up worse than the day before. I ended this tour at ATMRD in 2025. Where I saw, for the first time, what I was searching for, the research that mattered to me NOW and community. In the beginning I thought community was only people with Parkinson’s. If you have never spent a day sitting in a chair, looking completely normal while you are holding back a scream because your insides are shaking, how can you possibly know.
Sit down and listen please.
Eventually I expanded my definition slightly, to include the loved ones that we live with: care partners. That was certainly it. Us and them they were my community. Then I met more people, not people that lived or cared for us but others that understood but most of all cared and listened . Doctors, nurses, PT, OT, SLP’s, trainers, researchers, charity executives, even Pharma employees, who would have believed? Not me. My laser focus on a cure adapted too.
The myth that no one cared slowly faded away. You see it turns out people do care about ending Parkinson’s, a lot actually. Some extremely rich and powerful, some struggling just to survive. All united in the cure. The truth is it’s just not that simple. What we call Parkinson’s Disease isn’t even a disease at all. It’s a syndrome, a cluster of symptoms, loosely held together by the name of the man who observed them, James Parkinsons. You can’t cure a symptom, you can only cure a disease. So until we recognize that we’re only treating symptoms because they simply don’t know the basic thing to target, the sooner we can get to the root of it. They’re still building the darts we’re just the board.
Maria DeLeon, Esther Labib-Kiyarash,
Kelly Papesh (NeurolMotion)
There has to be a better way . Something that brings us all together , what are our goals? Today I listened to a Doctor speak, Joaquin Vizcarra, at the end of the Movement Disorder Congress that had just agreed 80:20 on this very thing, that we are not in fact, on the verge of a cure. He was actually debating about the thing that may change all of this, AI, clearly still in the chaos of those early toddlers years. He said we are lacking three basic things : consistency, confidence, access. There can be nothing without access. Period. Yet 2/3 of the world doesn’t even have Levadopa? Confidence? Well everyone’s confidence seems pretty strong actually, among the doctors and scientists at least . They all make good points. I mean I did 2 years in a Masters in Healthcare Administration, but I still randomly shout “the mitochondria is the powerhouse of the cell” like I ‘m 8. Everyone seems so confident except me, the center of the universe of it all. The patient. Is it transferable? Can you give away your confidence? Or do we have to share it? Patients confidence in science and healthcare is at an all time low. We need for someone to regain our trust. So please, for the love of God stop throwing our money away with more studies about the same things you did last year.
John Dean & Esther
Consistency requires a give and take where everything comes together to create a state where everything is fair and equal, homeostasis. The most consistent thing has been inconsistency. Some peoples ideas are venerated and cited at lightning speed, others die on a laptop hard drive.
The AMNEAL Team with Esther
Ideas about Parkinson’s go in and out of fashion like last year’s mom jeans why? Personalities, funding, timing, who knows. Consistency is hard with Parkinson’s, so many obstacles. Yet somehow I still feel that we are closer than before. That perhaps we can, as a community, help them help us, a little bit better, maybe a lot. I’m not suggesting waiting around for anything, we already have access to a disease modifying therapy, it’s not a pill, but if it was everyone would take it. It’s exercise. I do think we can ask to have more of a say in where the research dollars go and be better about what studies we participate in. I don’t try and change people or systems, I change myself, my response. The next shift is from a defensive to an offensive position. Patient led, not patient centered. These Paradigm shifts are the growing pains of progress. They require everyone working together with single-minded purpose and lots of trust. I think it’s possible. I feel it, the rumbles and shakes that come before a seismic shift. In 2024 a brash Neurologist said to me if he had to have any neurological disease it would be Parkinson’s because we have a lot of promising things happening. I plan to remind him of that, every year.
