Well, I'm pretty sure its Neurotalk. Yesterday in a press conference in Toronto, Michael shared his story of early engagement with fellow patients in online chat rooms (of course he was incognito at the time). Thought I'd share.

http://www.theglobeandmail.com/life/...rticle1300387/

Debi

Could have been BrainTalk...probably was.

OR another possibility since he refers to chatroom...could have been PLWP chat or Dumpster Gang chat?? hummm

Carolyn

. . . this was Braintalk. Neurotalk wasn't in existence. Braintalk used to get 5+ million hits a day. And it's still #1 when you Google search.

Peggy

I had to come back and edit the number of hits BT got. it was around 5 million, not 25 million. lol

and paula, you are right. It originally was MGH (Massachusetts General Hospital).

and here's a little interview John Lester did that reenforces what Debi told us:

TF: What's the most unexpected thing that's happened in your online communities lately?

JL: Several years ago we got some unexpected publicity when Michael J. Fox started using one of BrainTalk's chat rooms after he'd been diagnosed with Parkinson's disease. At first he used a pseudonym, but over time he became close friends with two other group members, Bren and Nan. The three of them often talked about advocacy issues and what they could do to help find a cure for Parkinson's disease. At one point Michael decided to tell them who he really was--but they simply would not believe him. Bren told him "Yeah, sure. You're Michael J. Fox and I'm Faye Dunaway." Bren and Nan went on to found the very influential "People Living with Parkinsons" organization (http://web.archive.org/web/200503051.../www.plwp.org/) a patient advocacy group. And Michael and I serve on their board of directors.
Published in The Ferguson Report, Number 9, September 2002

It must have changed names around 1999 or so.

actually it was pre-braintalk and called the mgh parkinson's chat room.
it became braintalk in 2000 or was that just when the format changed...hmm have to check those facts. we all moved here when braintalk went down for half a year.

paula

Thanks, Debi, for bringing this great article to our attention!

Although it's fun to hear Michael reminisce about his introduction into the Parkie world on BrainTalk, I think the real meat of the story is the honest and open discussion between Michael and Joyce Gordon, CEO of the Parkinson's Society of Canada, about her concern that the Fox Foundation's focus on research for a cure diverts attention and funding from care, and also Dr. Tony Lang's frank admission that PD is complicated and will not be soon or easily cured.

This is a conflict and a story that has long plagued the PD community in the US. Ten years ago, the idea that a PD cure was only 5 or maybe 10 years away was commonly believed and promoted, and the research dollars for PD expanded and flowed, both privately through the various US PD organizations, including Fox, and through a more robustly funded program at the NIH.

Even with the slow down brought to stem cell research during the Bush years, we learned that, as Dr. Lang said, PD is more complicated than once thought, and it will take much longer to medically treat and cure it.

So the tension between funding for research or care has grown even stronger. We know now that we should not be waiting patiently for a cure, instead we need to plan for lives that last for years with no real sign of a change to the current medication regimen or DBS (even the recent Azilect study results don't add up to much).

Where should foundation attention and money be spent?

The Canadian CEO Joyce Gordon argues that Fox fundraising competes directly with the one and only Canadian PD org: their Society. It is an easy argument for her to make, and she has the luxury to speak for all of Canada.

The US system poses a more difficult situation, with the 5 major PD orgs competing for funding attention. All of these foundations (MJFF, PDF, NPF, APDA, PA) direct all or a majority of their funding to research. PD care is often overlooked and underfunded. It's difficult, not as sexy, to raise funds for care - everyone wants to find or donate to a cure. It's the easy way for foundations to raise funds. It's not a secret.

But in the US, it sets up a scene for double the competition - tension between cure and care, and tension among all of the PD orgs for scarce funding dollars (I now include orgs with other missions, like PAN, in this mix, along with all of the regional orgs like NWPF or PAR).

This is also no secret. It is something that is debated among and between patient advocates, foundation staff, boards of directors and patient advisory councils, and there is no easy answer. Significant effort has been spent attempting various mergers and they have failed.

Given the current fractionalization of the organizational PD world, if I could rule the world, this is what I would like to see:

1. All new PD research funding funneled through the Fox Foundation, with current research projects consolidated and integrated under one national umbrella at MJFF.

2. Collaboration between the remaining orgs to focus their attention on various aspects of care that compliment each other. One example would be for each of them to take on what they already do wonderfully: NPF expand its Allied Team Training program and educate health professionals, APDA to direct and empower local support groups, PDF to tackle clinical trials - recruitment, training, and promotion. The Parkinson's Alliance would continue their mission of fundraising, but proceeds would be split among all initiatives instead of just research, including PAN, which would also be guaranteed a percentage of each org's take to fund their mission as our national government and legislative voice.

3. A committee of the whole would be implemented to plan community-wide opportunities for education and awareness - symposia, web casts, conferences would be coordinated; all publications would be consolidated for publication and distribution, thus avoiding the duplication that happens now. It would provide a single voice to speak for the PD community to work with other, singularly-represented disease groups (that have an advantage to PD now in that they can speak as one voice). It would also coordinate fundraising for all aspects of care, education and awareness.

4. Patients would be integrated as part of the decision making process at all of the organizations and at the central committee.

I think there is enough work to be done to keep every person currently employed on our behalf at all of the extraordinary PD organizations, and allow the organizations themselves to remain solvent and vibrant. Refocusing, coordination and collaboration would mean a healthier, revitalized PD community, and contribute to real progress in health care and medical science.

Well, that’s what I’m dreaming about on this beautiful, 80 degree fall day in the wonderful Pacific Northwest!

good ideas carey, but why fox? mjff has invested so much time and money to finding relief which, someday, well hopefully you won't, but someday most get there and little else counts. it becomes a real battle, usually caused by medications to just get thru the day. anxiety increases and panic gets harder to keep at bay.

our medications are not adequate and this is what mjff is devoted to doing best. they have researchers online now talking and our hometown doctors, the majority who do not live near research hospitals , are not online and know very little about anything being done for the future. that is where a focus is also needed.

I know people like jaye have been informing doctos about online threads for years but again, Jaye goes to doctors at johns hopkins who are in the position to act upon these things and are always researching.

but the average person has a neuro who doesn't even know the fox site exists, never has any information about clinical trials in the office and doesn't have the time to learn about them, They have only chemicals and DBS to offer and getting one early - well i can't understand. They get sued and are not so much in the industry profits –would this be true? But may wish they were..lol

so i see a huge need in changing our doctors ridiculous defense of each other like a mafia code. perhaps we should have doctors zero in even more on what they know and are certified to treat. Offer several of those with the same illness a hippa waver and have group appts where everyone can share. Invite drug reps to explain the chemicals. or have a pd day and just do your appt by webcam. if patient wants or needs to come in make an appt

this seems suitable for those on computers to learn much, including trials.

mjff is doing some incredible pioneering sharing. reorganizing seems like fixing something that isn't broken rather than support and enhance it.

paula

Hey Paula - I agree with you - those are great ideas!

Not sure what you meant about "why fox?"

I think MJFF does the best job for research; I'd personally like them to focus on that and leave the care to the other orgs. They all have a lot to contribute.

Love your ideas, Carey! The dream reorg!

jean

I don't know the players or the politics of this situation well at all, but I do believe strongly that the messy, sometimes inefficient, frequently redundant, invariably competitive situation of multiple funding sources, clashing research agendas and diverse schools of thought provide us with the best bet at progress in multiple areas.

If there were to be one clearinghouse for all grant awards or whatever, research would soon be homogenized with no possibility that competing models would get a chance to prove their worth. We need to proceed along many paths simultaneously, and see which is most beneficial and, maybe, woven all together, something good will come of it. The patient voice is an essential one.

If anyone knew where we were going and how to get there, research wouldn't be required.

Sasha,

I'm out of my league talking about this stuff but what little common sense I have suggests that it would slow everything down. MJFF recognizes and makes the effort to include urgency in the plan.

Here's one program from the The Edmond J. Safra Core Programs for PD Research, as well as the industry-exclusive Therapeutics Development Initiative page on the mjff site and it's programs like these that could be slowed down or non existent in a sea of paperwork:


Rapid Response Innovation Awards
An Edmond J. Safra Core Program for PD Research
--Total available funding: $2 million
--No deadline; applications accepted at any time
Rapid Response Innovation Awards provide up to $75,000 for projects with little to no existing preliminary data, but with potential to significantly impact understanding or treatment of Parkinson’s disease. MJFF is eager to fund high-risk, high-reward projects tackling critical scientific roadblocks to open new avenues for PD therapy development. Research proposals may be submitted at any time and funding decisions are made within six weeks of receiving the application.

http://michaeljfox.org/newsEvents_mj...cle.cfm?ID=354

paula