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Benyamin

Parkinson's World Tour

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Greetings forum community,

 

My name is Benjamin, I am an independent science and tech researcher as well as a Parkinson's disease patient advocate. I have recently been touring some of the top labs in the world looking into the latest developments in PD research among other things and writing about my experiences. I also try and meet with as many PD people as I can along the way. You can find my story here...

 


 

I will be continuing my tour throughout 2017, I don't have a detailed schedule, I like to keep things loose, but I will post here as it comes and if anybody is in any of the places I will be going and would like to meet up I would be happy to see you.

 

I'm based in Toronto but will be in Austin, Texas from the 26th to the 31st of January and Vancouver from the 31st to the 7th of February.

 

If you prefer you can send me an email at benjaminstecher@gmail.com

 

More places and dates to come

 

Hope to hear from you soon,

Take care,

Ben

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Hi Benjamin

 

I read about your tour of top labs with a great deal of interest, many thanks for letting us know. One thing you don't mention is any research being done on  monoclonal antibodies. Do you know if there are any groups involved in this line of research, and if so how much promise does it hold? From what I've read, the theory behind such treatment is plausible. Unfortunately this is a highly complex area, so we can't just rush out and buy a bottle of monoclonal antibodies and try it for ourselves.  

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Sunbird, never really heard of that before, where can I learn more?

 

Texas Tom, a Rocksteady class in Austin would be perfect!

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Hi Ben,

 

I admire your efforts...  I have had PD for 15 years (was diagnosed at 33).  I am currently using the Duopa infusion pump as my only treatment intervention.  It is amazing!  I have been in about 6 clinical trials at the Cleveland Clinic.  If you ever visit Cleveland, let me know...  There is a ton of research going on here.

 

Keep up the good work!

 

Mihai (Michael)

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Hi Benjamin

 

Here's quite a good article on the topic of monoclonal antibodies: http://nurse-practitioners-and-physician-assistants.advanceweb.com/Features/Articles/Can-Monoclonal-Antibodies-Help-Treat-Parkinsons-Disease.aspx

 

You can also go to the Michael J Fox Foundation's website and do a search for monoclonal antibodies, where you will find a number of articles on the topic. Basically what this research involves is the development of an antibody to alpha-synuclein which occurs naturally in the brain. It is thought that when it aggregates it prevents the production of dopamine (that's a very basic explanation).

 

It seems logical that if you can identify what's killing off the dopamine-producing cells in the brain and a way of preventing it from doing that, you will be able to stop PD in its tracks. 

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Update: Had an awesome time in Austin with Tom and his fellow combatants at The Rock Steady Class. It was my first rock steady class and I was definitely impressed, if anybody has one close to them I would definitely encourage you to attend. From there I went to Vancouver and spent a full day at the Centre For Brain Health at UBC. I've visited a lot of different clinics but I think this one did the best job of ensuring the interdisciplinary approach that treatment of this disease requires.

 

Next stop on the tour will likely be the Boston area towards the end of this month, if anyone is in the area and would like to meet up please let me know.

 

Mihai, I may include a stop in Cleveland on this trip, I will be sure to let you know if I do.

 

Sunbird, interesting finding, another thing to add to the ever-growing list of things I probably should be doing :)

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Hi Ben,

 

Definitely let me know if you come to Cleveland. You should contact Jay Alberts and his research team, if you haven't already!

 

Michael

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