Surprises.
It's hard to believe I started on this path 8 years ago.
My buddy Ivan 's Parkinson's was worsening and he wanted my help. I wanted to help but I told him it was beyond my ability. I was first-rate as a cardiologist, but no expert in neurosciences. But while I did not believe in myself, Ivan did. And he pushed me relentlessly.
So in November 2017 I started to read about Parkinson's. And in January 2018, I filed a provisional patent application for what is now US Patent 11,806,326, methods for dopamine modulation in human neurological diseases.
The path forward seemed very clear. So yes, I'm sure the 2018 version of me would have been surprised if not shocked if told it would take 8 years to be on the verge of launching the first clinical trial.
Over the past years, I've heard from so many people with Parkinson's and their families/friends. "Can you tell me more?" "How can I enroll in the trial?" And I've even heard from people with another key question; "how can I invest?" (I like that last one a lot because it will enables us to get to the finish line.)
But I've not heard from any doctors asking me, "how can I treat my patients with this drug?" That is another big surprise.
I need to emphasize that I do not recommend you and your doctor try this drug as a treatment. In fact, I recommend strongly against it. Yes, the drug is available. But the drug is available in a dose that is so high that I believe it would be likely to make you sicker if you took it. As discussed in the patent, the key is to start at a low dose that is not available. That's why we are making it in that low dose.
Why aren't Parkinson's docs contacting me to ask how to use the drug for their patients? It does not require much insight to recognize the devastating effects of the disease and to understand the woeful inadequacy of the existing treatments. Are doctors not looking for new approaches that could reverse the disease? I'm sure they are interested.
I believe the problem is that most people are not swayed from the conventional view merely by data. As a friend recently pointed out, the community eventually accepted handwashing because Semmelweis showed the effects on people living or dying. The community accepted that bacteria caused gastritis/ulcers because Drs. Marshall and Warren showed that antibiotics "cured" gastritis.
When we start to dose RB-190 in people with Parkinson's next year (he wrote hopefully), we'll show the community that dopamine can be reduced safely in this disease, showing that dopamine deficiency is not the problem.
Tangible clinical data. That's how I'll surprise them this time.
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About Jonathan Sackner-Bernstein, MD
Dr. Sackner-Bernstein shares his pursuit of conquering Parkinson's, using expertise developed as Columbia University faculty, FDA senior official, DARPA insider and witness to the toll of PD.
Dr. S-B’s Linkedin page
RightBrainBio, Inc. was incorporated in 2022 to develop tranformative therapies for people with Parkinson's.