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Meet Summit’s Contributor and Collaborator, Benjamin Stecher. Benjamin is a Parkinson’s Patient Advocate, who wanted to better understand his diagnosis of Parkinson’s disease (PD) better. To do so, Benjamin traveled around the globe interviewing the top researchers and visiting their labs.
I first met Benjamin at Dr. Jeanne Loring’s lab when his journey first started. 5 years later, Benjamin joins Summit’s efforts to provide a unique insight to Parkinson’s disease and treatment modalities. He also provides information on new research and updates on on-going research.
Today, Benjamin is in the bay area busy with his new position, Chair of the Patient Advisory board (PAB) to Rune Labs.
I also recommend Dr. Alberto Espay’s and Benjamin’s co-authored book: Brain Fables.
I hope you enjoy The SCOOP.
Jenifer Raub, President,
Summit for Stem Cell Foundation
Post #3: April, 2022
By, Benjamin Stecher
My Three Doors…
I was recently asked by the good people here at Summit for Stem Cell Foundation to imagine three doors that would in essence make up the three wings of a newly designed wellness center. Each door would be labelled with something which I think most people diagnosed with Parkinson’s Diseases could benefit from, three things that if they existed would enable them to live a little better tomorrow than they do today.
Well, without any further ado, here they are…
My Door #1:
A better way to track symptoms and disease progression.
There are dozens of over the counter nutritional products and medications out there that purportedly benefit people with PDs. However, knowing whether or not any one of them might benefit any individual is a near impossible task because of how large the placebo effect is in PwPDs (People with Parkinson’s diseases). What we need is either a biomarker that can be tracked and which reliably correlates with how a person with Parkinson’s is feeling, or an instrument of some kind that can be used to digitally and passively do the same thing.
From my own research scouring the planet looking for what is out there, I think the best hope to find biomarkers will be with Cincinnati Cohort Biomarker Project led by Prof. Alberto Espay. (ccbpstudy.com)
As for a digital tool that might be able to help some people track their symptoms and disease progression, or at least cut down some of the time spent at a doctor’s office filling out questionnaires, I believe there the answer lies with Rune Labs and an app they have developed called StrivePD.
(Disclaimer: I am now affiliated with both the CCBP and with Rune Labs, but note that I only chose to be affiliated with both after seeing what is out there and then making a calculated decision about the future of what was needed for PwPDs.)
A Comprehensive Wellness Center
This might be weird, since this door is hypothetically located in that very wellness center we hope to build here, but until it is actually there I am going to keep pushing for it.
One of those ideas that seems almost too obvious. It takes a village to properly manage a person with PDs care. Nurses, social workers, occupational therapists, physiotherapists, speech pathologists, patient mentors, etc. etc.
This then compounds itself if that individual elects to go for one of the advanced therapies like stem cell replacement therapy or DBS. For my own DBS care I now need to add to that list the following specialists: a DBS nurse, programmer, psychologist and psychiatrist.
Also, after DBS I found that I also needed a dentist who was comfortable with that procedure. I can imagine that there might one day be a host of other things that I may need which would require even more expertise and sub specialists to tack onto that list. How the hell is any one person supposed to know where to go for all that? Wouldn’t it be nice if there was a center that could do all of that for me?
Enter the Wellness Center
(Disclaimer: Benjamin is a member of the Board of Governors for Summit’s newest project, The Wellness Center for Parkinson’s disease, working to make this vision a reality.)
My Own Chocolate Emporium
My Own Happy Place
At the end of the day, we all need a place we can go to where we feel safe and comforted. A place that lets us be what we are, where no one judges and all the hustle bustle and noise of the world fades and is replaced with a calm serene touch. This could be a meditative chamber where you go into and feel nothing but the warm comfort that comes from easing one’s mind. For some this could be the feeling you get after a rigorous Yoga class when every muscle you have feels warm and loose and every pore in your body opens to the world. For others it could be the embrace of a loved one or the smell of rain in the morning.
Whatever it is for you, wouldn’t it be nice if there was a place out there you could go to get it all?
We would love to hear what 3 doors other people out there would choose. info@SummitforStemCell.org
About Benjamin Stecher,
Benjamin Stecher was born in Nairobi, Kenya but grew up just outside Toronto, Canada. He studied history and philosophy at the University of Guelph, but as soon as he graduated he took off and spent most of the next decade living and working in East Asia as an education consultant.
All that changed when, at 29 years old, Benjamin was diagnosed with Parkinson’s disease. The promising future he had been building towards suddenly faded and was replaced by a gloomy fog of uncertainty and despair. As his disease progressed, he realized that he needed to come back home to learn how to better manage his disease.
But, as he started visiting labs and attending conferences, he soon found himself enthralled by the rampant pace at which biomedical science has progressed in the 21st century. He 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 he could about this disease and what therapies were on the horizon.
He now speaks regularly at academic centers and biotech companies on issues related to neurodegenerative diseases, research advocacy and healthcare. He is also the founder of Tomorrow Edition (tmrwedition.com), and a patient advisor to several organizations including the Toronto Western Hospital Movement Disorder Clinic and the World Parkinson’s Congress. Benjamin has also authored several peer-review papers and serves on the editorial board of the Journal of Parkinson’s. Ben and Dr. Alberto Espay co-authored the recently released book, “Brain Fables” (published by Cambridge University Press).
Invited Speaker at:
Aligning Science Across Parkinson’s 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.