It would be wonderful to see Parkinson's advocates in the Michigan area at Parkinson's Movement's Rallying to the Challenge Meeting 26th and 27th September 2016 at Van Andel Research Institute, Grand Rapids Michigan
The theme this year is Data, Data, Data:
1.Data – to see what’s happening at the cutting edge of patient advocacy in Parkinson’s and how patient specific information and data is redefining the research landscape.
2.Data - to be part of a global initiative which aims to inspire greater accuracy and urgency by collecting and applying information about the personal experiences of those living with Parkinson’s to shape scientific and clinical expertise ensuring progress in Parkinson’s is injected with more precision to better address the personal nature of Parkinson’s
3.Data - To join- like-minded and proactive people with Parkinson’s in establishing how information provided by us, can define and accelerate overall progress in treatment of this condition.
Sorry Helen but as a great fan of CPT, as you know, I cannot get excited about your Data, Data, Data Agenda. I think this sounds as though CPT have come to a dead end in looking for the Cures and are Navel Gazing. Apologies for the bluntness.
thanks hanifab 23. I believe it is worth our while t dothis - if you agree? We will need to draw up a Terms of Reference for the project and see who would be prepared to join . We would naturally liaise with CPT (for their exercise that they started looking at existing drugs that their scientific experts believe show potential to assist PwP) I am excited by Nilotinib - a cancer drug which has shown some promise and CPT are trialling it later this year / early 2017. We would need to review all current research to se what interests us most - I am very keen to work with these projects which are looking at killing off misfolded alpha-Synuclein protein (I hate the thought of Lewy bodies floating round my brain!!)
We would need to be prepared to participate in the clinical trials of our selected projects (that would be a major plus for our group and we would liaise with other likeminded PwPs
I see greater liaison with CPT because of their scientific knowledge and getting things moving once we have decided which projects we will back publicly and with our contribution to participating in the Clinical Trials of our selected Projects.
As I said this preparedness to participate will make us stand out and give us credibility'
Bob, thanks for this. Actually this is all about what information people can supply that really will inform and change research - as too often research is driven from the researcher's questions rather than the questions of PwPs. We just hosted our 5th drug repurposing meeting (Linked Clinical Trials) and have got a number of potentially very exciting leads through this to develop in line with the 8 other treatments we are progressing to slow, stop and reverse Parkinson's. Do know we are not giving up till we fix it!
Helen - thanks for your response. I never thought that CPT would change it's modus operand - it's just the Data, Data, aData agenda.it is good to hear that you have a number of drugs in your linked clinical trials. Our new group, if it gets of the ground, will be most interested in studying them and heling you to achieve your ambitions . as well as our own
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Results of Mannitol Repository from Clinicrowd
Next NoSilverBullet webinar on 17th of June: Sackner-Bernstein, MD, on "Why I am optimistic that we might now have a Silver Bullet for PD".
Medications of Parkinson’s Disease or Once Upon A Pill:
