Thank you docJohn!

NeuroTalk Parkinson’s Group Brings About Change at Michael J. Fox Foundation
by John Grohol on December 16, 2008

Our savvy e-patients over at NeuroTalk noticed the launch of a new service by the Michael J. Fox Foundation, one of the leading Parkinson’s disease advocacy and research organizations. The new service, called PD Online Research, is billed as a “new web community of scientists, industry professionals, grantmakers and financial investors dedicated to advancing the treatment, prevention, and cure of Parkinson’s disease.”

Notice a group missing from that list?

So did the members of NeuroTalk, who called the Michael J. Fox Foundation on the carpet for not including patients in this conversation at the onset.


The resulting discussion caught the eye of the Michael J. Fox Foundation and Michael Rogan, an Associate Director at the Foundation. In his note to the community, he said:

As a result of the SFN presentation, we received a number of inquiries from scientists wishing to sign up now, though PD Online Research will not launch until spring 2009. This led to our issuing a brief announcement last week on the MJFF site, directing scientists to a site where they can submit a membership application.

I am sorry to note that this brief announcement led to upset in the patient community because it described only a part of our efforts and suggested, by its incompleteness, that we were specifically excluding patients from our online plans. I want to take this opportunity to apologize for this poor communication and to stress that including patient voices in our new resources has been a primary consideration from the start and has been the subject of much discussion.
Which is great, but the site initially made no mention of patients being involved in the process (until after the NeuroTalk members started the thread discussing this oversight).

If, indeed, patients were an integral part of the new effort, then they should have been mentioned on the site at its launch. How can you “forget” to add perhaps the most important group of people to such an effort?

So now the MJFF is conducting a survey of patients to try and understand how the group of scientists, researchers and investors (?!) can benefit from their insights. Um, okay. But patients, not investors, are at the core of why you’re doing the things you’re doing. If you don’t know their place in the conversation in the first place, I’m not completely convinced you’re even on the same page as e-patients.

E-patients don’t want to be an afterthought to a community that is hunting down the cure for Parkinson’s. They want to be there, hand in hand with the researchers and the theorists, to try and tackle the problems that diseases like this spread, from perspectives that maybe not all researchers and theorists have thought of.

The Michael J. Fox Foundation is doing great work for Parkinson’s disease. I hope it continues the work by opening up and embracing e-patients in its PD Online Research efforts soon.

John M. Grohol, Psy.D. is one of the pioneers in online mental health education and support, getting his start on the Internet in 1992 with depression support groups and advocacy efforts. He founded and is the publisher of the Internet's leading mental health network, PsychCentral.com.

http://e-patients.net/archives/2008/...oundation.html

perhaps we should remember how important it is to help those brilliant ones
help us! to do this we must continue to post imput
&
go to this very important place - which breaks the barriors between the statistics and our realities -
http://www.acor.org/epatientswiki/index.php/Main_Page
and WE e-patients can all help be part of many cures...

With one week left, I dragged this body out to the stores....was tired after just getting ready.

I saw this thread as I was going out the door and also read an email very quickly about something related and felt anxious about getting back to reread it all and respond. I'm not used to public support, and was once again shocked to see anyone actually write about this elsewhere.

DocJohn, you are the first to do what we are asking from multi-disciplinary professionals involved with PD - and that is communicating. It's just a matter of communicating, and I sincerely, words aren't enough to describe, appreciate your support.

We are floundering around, trying to come up with a way to help, with no leader, just trying to come up with ideas of how to put what we are "living" into the research formula. The Internet is responsible for equipping us, making contacts who we've worked with in person....this is REAL.

But we don't know for sure how to do this - we need more information - so that we do not rush into an unnecessary database that will just flop.

Dr. Rogan and DocJohn, although not necessarily seeing it from the same perspective, will certainly understand each other more after offering their communication. We have heard both of their perspectives. I have heard another perspective from a knowledgeable patient friend about looking at the NIH. Perhaps we should back up, and just communicate first before creating a database that will serve no purpose.

Doc John's father has PD and I believe Dr. Rogan said his mother did or does. I sincerely hope that communication among the different perspectives continues with gusto. It's just the right thing to do.

Thank you for the support - we are all in this together. DocJohn I am humbled by your caring.

With respect and good cheer!
paula

edited the emotion out. sorry....feeling a bit overwhelmed.

I think you deserve a lot of congrats for getting contact made with MJFF.

As for dying, remember we none of us make it out of here alive, I think it is best not to think too hard of the things which constitute our mortality.

Once again, well done and take care.

Neil.

Sometimes we may take for granted how on the "cutting edge" you may be. A simple thing such as opening the lines of communication between all parties -- something we all take so much for granted because of the egalitarian nature of the Internet, where we all treat one another naturally as "equals."

Happy to help. One of my roles, as I see it, is for advocacy on behalf of those groups who often are unheard and make sure they get heard and get not only a seat at the table, but are taken as seriously as any funder.

My holiday present to you!
DocJohn

Doc John -

Your helpful article on our behalf is a great example of why we must never give up and always keep talking. We don't know when or by whom we will be heard.

Thanks a million!