Jenny McCarthy- if only we had a mother like her of a young onset PD teenager!
she is great!
http://www.youtube.com/watch?v=-5WTaLnDPY4
http://www.youtube.com/watch?v=Shgoub7b4cs

One of the best things you can do for the PD community is to keep this thread going. You are just going to have to trust me on that. I have reason to think this post is going to travel. If your comments are too critical without a reasonable explanation, i may request removal.

Suggestions to say how you feel about and don't just follow the crowd please:

sham surgery

FDA has regulatory plans for alternative trials but we don't know the status of them.

Venture capital needed - in spite of how we may personally feel

We need to read websites before posting. i learn that the hard way all the time.

CS has brought up a great point. How about digging around to see what can be forund about complete happenings.

BUT....the reason I am pushing this, is because I think we can help them. The orgs compete....its very hard sometimes and things aren't always how they look. So what's the scoop right? And when are you going to figure out we are the ones you need.

What is the status of GDNF - all the fuss and nobody tells us ANYTHING. Hello? we know this!!

ok finished trying to save my life in this post anyway - excuse the outburst.

paula

First, I am appalled that anyone would point an accusatory finger remotely in the direction of Michael J. Fox or the Michael J. Fox Foundation (MJFF). He is the only patient I know of who has totally committed himself to the cause (the cause being not only in finding a cure, but in helping with quality of life issues). Only one other celebrity patient has done as much toward fighting his condition – and that would be Christopher Reeve (former Superman actor who was paralyzed from a spinal cord injury). If I am wrong, please let me know.
(see the Christopher & Dana Reeve Foundation) http://www.christopherreeve.org/site....CC03/Home.htm

I believe the MJFF is rapidly approaching a benchmark of raising $100 million specifically for Parkinson’s research. That’s pretty impressive for a research specific disease. And not being critical of those mentioned here, but I haven’t seen other actors with Parkinson’s – some now deceased - (Deborah Kerr, Vincent Price, Whit Bissel, Joe Cook); nor any of those famous people Billy Graham, Michael Kinsley, Janet Reno, or Andy Grove sinking as much of their time and money into PD research. (Mohammad Ali has contributed much to PD research, but still has not put as much effort into this war against PD as has Michael.

Also, I know that the MJFF is always open to suggestion. As Carey pointed out, I also contributed to the writing on the site concerning newly diagnosed. I have attended their research roundtables where administrators receive input from attendees, many of whom are patients. I want to point out that he DOES have patients on his board. There are six people on the MJFF board who are living with Parkinson’s (not including Michael), and the staff includes one patient and six others having a direct connection with Parkinson’s.

It’s so easy to sit back and question the people, the protocol, and even the budget of a foundation when we really are quite removed from it. Check it out before saying something against one of our greatest allies. To operate frugally, it MUST be handled as a business. The bulk of the money brought in goes directly to reviewed research, not “fluff.” Review their Annual Report on their website – you won’t find a huge reserve as is true of some other “patient” organizations. In fact 84% of every dollar goes for research – and that has been from the beginning. I have personally been to the MJF Foundation office. There isn’t plush leather furniture or even the highest technological office equipment used. The offices of those employed there (and many are volunteers) consist mostly of cubicles marked off in small areas. The CEO office reminds of a fish bowel – just a small glassed in area with a desk, a file cabinet or two and a small round table with chairs for conferencing.

We cannot fathom all of the details that go into funding research or grant-making, plus fund-raising, roundtables, and day-to-day operations.. Speaking only from opinion, I think Michael J. Fox has chosen highly skilled people to make decisions about whom or what gets funding and leaves the details to his staff. But make no bones about it; he has his finger on the pulse of what’s happening in the research world. He has testified more than once before Congress about living with this horrible illness. He has written a book (is working on another), and has taken a not-so-popular stand against current administration concerning embryonic stem cell research. He has been ridiculed (Rush Limbaugh wins the award for that one!), he has taken time away from his family, and I am sure he has lost sleep over the “best” way to handle the research process. I know what it takes to expend that much energy while living with Parkinson’s. He could afford to do nothing and have his needs and comfort come first, but he chooses to make the ultimate sacrifice.

THANK YOU!

Peggy

When honest criticism takes on a personal slant then it is dead in the water and once again it is relegated to the back page less someone gets their feelings hurt.

Parkinsons is a disease and not a entity not to be talked about even if related to the human behind the fight.

Mike can take it and dish it out as well and I don't think he will be offended by anyones opinion. He will read it and take the good from it and discard the rest as we all do a hundred times a day on many issues.

The more we talk the easier it is to wait and like Paula says undestand.

Do I sense an interruption in the flow here? lol


paula

MJF is my hero. He gives me hope because I know he wants to be cured too. That's a pretty strong driving force, and reason to stay committed.

ol'cs
I think you are wrong. I happen to personally know a member of the MJFF ESAB and he is a brilliant scientist,a patient oriented clinician and an overall first class person who has dedicated his career to finding better treatments and a cure for PD. He works tirelessly and keeps a grueling schedule speaking at many patient oriented events with no compensation along with attending the necessary seminars and symposia for his profession.
No ego and very frugal. Works in the lab 4 days/week and in clinic 1day/week. I am talking 12 hour days not including travel. So he gets it.
I am thankful that MJFF can obtain people of such talent to work on our cause.

I also personally know several basic scientists who have received funding from MJFF and they are the best at what they do and spend more hours in the lab than you would care to imagine. Best of all they get results.

I would much rather have MJFF spending my money than the NIH/NINDS.

Go MJFF!

I posted my reply before the one you wrote requesting comments on various things in the Parkinson's community. But I also had an opinion and didn't want people to go away thinking some incorrect statements were true (e.g. no patients on the board, etc)

Peg

I was discussing this thread with a noted PD researcher and he said "MJF is the real deal", and that the reason lay people are not iincluded in scientific roundtables is that so much time is spent explaining the science to them that it leaves little time for scholarly discussion. I know a few PWP's that could hold their own in a scientific discussion, but it is a point, generally well taken.


Charlie

Charlie - That's what the researchers say - but the real tragedy is some of the basic researchers have never even seen a real person with PD; they've only read about it and studied it in journals. There should always be a patient present - a not too subtle reminder of why they are in business.