Benjamin Stecher on Advocacy

Benjamin Stecher on Advocacy

An interview with Benjamin Stecher on Advocacy, January, 25 2024 by George Ackerman, Ph.D, J.D.



I was born in Nairobi, Kenya but grew up just outside Toronto, Canada. I studied history and philosophy at the University of Guelph, but as soon as I graduated, I took off and spent most of the next decade living and working in East Asia as an education consultant.

What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


My life changed when, at 29 years old, I was diagnosed with Parkinson’s disease. The promising future I had been building towards suddenly faded and was replaced by a gloomy fog of uncertainty and despair. As his disease progressed, I realized that I needed to come back home to learn how to better manage his disease.


But, as I started visiting labs and attending conferences, I soon found himself enthralled by the rampant pace at which biomedical science has progressed in the 21st century. I spent the next couple of years traveling the world visiting research centers and pharmaceutical companies to learn from the top minds in the field all that I could about this disease and what therapies were on the horizon.


I now speak regularly at academic centers and biotech companies on issues related to neurodegenerative diseases, research advocacy and healthcare. I is also the founder of Tomorrow Edition, and a patient advisor to several organizations including the Toronto Western Hospital Movement Disorder Clinic and Rune Labs, a San Francisco based brain-tech company, where I chairs their patient advisory board.


What type of goals do individuals with Parkinson’s have when working with you?


Try to be positive and spread the message of challenges but there is a lot that can be done with this disease. It is an opportunity to regain life. It does come with challenges.


What would you like to see as a future goal for your advocacy?


I want to keep advocating. Working with medical centers and talking to share my experiences. I like speaking to individuals to give them real life experiences.


What events do you participate in?


Aligning Science Across Parkinson’s Invited Speaker at:


Workshop, Chan Zuckerberg Initiative’s Neurodegeneration Challenge Network Meeting, StemCellTalks Toronto, Partnerships in Clinical Trials Europe 2018,  2019 World Parkinson’s Congress, 2019 ADPD Congress – Roche sponsored talk, Alkahest, Biolegend, Lysosomal Therapeutics, Abbvie’s Sharing for Better Caring Symposium, University of Toronto Neuroscience Rounds, McGill (multiple classes), EPFL Open Science Summer Camp 2019, University of Cincinnati Neuroscience Rounds, Tanenbaum Open Science Initiative, 2018 & 2019 Rallying to the Challenge at Grand Challenges in Parkinson’s Symposium, 2018 & 2019 Parkinson’s Canada Research Symposium, European Parkinson’s Disease Association’s YOPD Symposium at the European Union Headquarters,  2018 Ontario Brain Institute Research Summit, The Buck Institute, 23andMe, System1 Biosciences, Duke-NUS, NIH Neuroscience Rounds, Aspen Biosciences, Porridge for Parkinson’s, Bial Pharmaceutics, Nectar 2022, Lundbeck, Roche, Rune Labs, EPFL patient rounds, Abbvie, Luxembourg’s PD Lectures, and OrganoTherapeutics.


How does this also assist the caregivers?


They also have experiences and things to discuss. They are important and we need their perspectives also to help find a cure.


How can someone get in touch?  What is your website?


How can others also become advocates for awareness?


It requires a lot of education. You have to make sure you understand what you are getting into. Once you have a strong base you can find your own niche and tell your story.


Why should people who don’t have Parkinson’s care about this? 


A lot of us are going to be getting Parkinsons or family effected so it is important to be informed. The best avenue to explore the brain. It is an incredible tool but a lot of information in the community and we need to explore these topics together.


Have you had any family members or relatives affected by Parkinson’s disease?



If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


Don’t give up, don’t let anyone define this for you. Make sure you define it for yourself.



More on Benjamin….

In November, 2013 I was diagnosed with Parkinson’s disease. I was a 29 year old kid doing quite well for myself living and working in China when I got the news.

There is no cure for Parkinson’s disease, there aren’t even any treatments proven to slow progression. When you get it, you have it for life, and the only thing you know is that things will get worse as time goes by. But, I didn’t know any of that when I was first diagnosed so initially it didn’t bother me that much. My symptoms weren’t that bad and I believed that I could continue living as though nothing had really happened. But, they don’t call this disease degenerative for nothing, over time my symptoms progressed to the point where I felt the need to take action. I moved back to Canada, giving up a promising career in China, to not only learn how best to manage my health, but also find out what future therapies were on the way.

At first, I didn’t really know where to turn to, no one I knew had it, nor had I even heard of anyone with it outside of Muhammed Ali and Michael J. Fox. I remembered a video of Ali lighting the torch at the Olympic Games in Atlanta and seeing his quivering hands as he lit that giant flame. Most people probably look at that moment as a defiant act of courage from this great man who had conquered the world and not let anything stop him from getting what he wanted out of life, not Joe Frazier, not the United States government, and not Parkinson’s disease. But what I now saw when I looked back at that video was the future I was doomed to live, hands trembling, frozen expression on my face, barely able to walk properly, probably reliant on a myriad of different pills just to make an appearance.

So, where to go? Who to talk to? At any other time in history the best I would have been able to do is travel for miles to the nearest specialist (or witch doctor) and rely solely on whatever ill-informed advice he or she would have had for me. But, we live in remarkable times and I soon realized I had more resources at my disposal than any king or emperor had ever dreamed.

To the internet I went where I found people all over the world working diligently to fix what was ailing me – patients and physicians and researchers in seemingly every corner of the world, each with their own story to tell and advice to give. And with email addresses to boot! So I began reaching out to people, telling my story, and asking them if they would tell me theirs.

I have since toured some of the top research labs in the world and met with hundreds of the best physicians and scientists on the planet. These men and women have given me hope that soon enough we will have more effective treatments for this and other diseases. This journey has also sparked a curiosity in me for the future of humanity as well as a belief that we are progressing towards a more enlightened and hospitable tomorrow. That spark became the impetus for starting Tomorrow Edition, my attempt to spread a little excitement and understanding for all that the future has in store.

The disease itself continues to suck, but I do have it to thank for everything I’ve learned since being diagnosed. The information age and this disease has enabled me to get my foot in the door into places I would otherwise never have been, and connected me to people changing the world. It has also given me the chance to observe science in action as it pushes forward a frontier of knowledge. Science is an imperfect process, but it is responsible for bringing light to our rock in space and giving us the knowledge and tools needed to try and make sense of reality and of ourselves. The study of the human brain, and what goes wrong with it, is our greatest and most challenging frontier, I find myself oddly grateful to have been given front row seats in our collective journey to tackle the most difficult puzzle we have ever faced.

– Benjamin Stecher 


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