The agreement reached between the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids last week regarding Linked Clinical trials for PWP is a major breakthrough on the way to better treatments and ultimately a cure for those living with Parkinson’s disease around the world. The movement has begun for PWP and it is our turn NOW!
How can the Parkinson’s community help move this forward? We need to act fast. We need patient advocates across the world to make it happen. Who is going to join me? We will be starting in North America. I will be looking after Canada.
Simply put the clinical trial procedures are going to be patient driven. No decisions without asking us first. We will then go to the neuroscientists and present ourselves to them. This will be very different from the present method of neuroscientists developing a hypothesis , applying for grants and finally looking for PWP to participate in the study.
The process on how this can be accomplished will need advocates’ input. This means we, the global Parkinson’s community have to unify. We need more advocates to educate and decide which trials we will chose to participate in. Without clinical trials there will be no movement towards the cure. Parkinson’s Movement Canada’s vision is to gather PWP to become advocates from across Canada to be the experts for the clinical trials. Advocates will be our support people for PWP in Canada to contact regarding the trials, the plan for implementation and support throughout the entire process from start to finish. The advocates will be the go to people across Canada during the trials.Included in the process will be logistics of bringing us, the PWP into the study. Maybe we can bring the study to us instead of having to travel great distances to participate. Also the plan is to have the cost of the trials for PWP included in the application for the grants. Some of the Linked trials already have funding. Under no circumstances will PWP not be included due to costs incurred due to distance and time away from home. You told us in the survey prior to the meeting in Grand Rapids what the barriers have been and we will eliminate them.
How can we do this in Canada? We need to work together to come up with a plan. We need to do this right now! There are so many of us living with Parkinson’s at present and more and more are being diagnosed across the country daily.
Canada’s advocates role will include contacting PWP in their area and educating everyone as to why participation is so important to outcomes. Advocates will also provide support throughout the process and encourage participation.
There will be a training session for those who sign up to be Canadian research advocates so you will never be on your own.
We as people living with PD don’t have time to waste .
Please email me at firstname.lastname@example.org if you are interested in being a Canadian advocate. We are a big country spread out over a vast amount of miles. We need many to make sure everyone living in Canada can be part of this great challenge.
I know a lot of you already and am expecting your reply.
When we work together, together we will win!
Hello from chilly Trefonen!
Today was a pretty alright day. It started with breakfast in the grand dining room of Moors Farm, cooked by Henia. We felt like Royalty eating off of the Denby tablewhere! Breakfast was delicious and dad had sausage that is specifically made for Moors farm. Very posh. Henia, in her down-to-earth manner explained that she had to have specific sausage made for her guests that come to hunt pheasants and “require” sausages on toothpicks with dipping sauce as their afternoon h’ors d’overs…I suppose you are willing to be accommodating when someone is paying fifty thousand pounds per day to go hunting…and that’s just for the hunting!
After breakfast, we struck out on our way along the Montgomery Canal…a welcome change from sheep, sheep, sheep…oh and did I mention the sheep? The trail was relatively flat and quite scenic as we passed several swans, ducklings…
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by Darcy Blake | On September 9, 2014, Dr. J. William Langston, Parkinson’s Institute Founder, Chief Scientific Officer, and Movement Disorder Specialist spoke to a crowd of about 200 people at the Parkinson’s Institute in Sunnyvale on a presentation titled More than Just a Movement Disorder.™
He began his talk with a candid confession about his five-year battle with cancer. People often ask if his medical ordeal has given him more empathy for patients with Parkinson’s Disease. “No,” he explained, “I have always had empathy for my patients, but having cancer has increased my admiration for the courage and strength of will in my patients with Parkinson’s Disease. You may not beat it, but you don’t let it beat you!”
On this occasion, he explained the onset of a complete change in how we think of Parkinson’s Disease. Recent studies are transforming medical opinion about the nature of the symptoms…
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This is going to be a game changer in the world of Parkinson’s clinical trials, Have a read