Link to Patient Survey on MJFF website
 

I'm putting this in a new thread so it will be easier for everyone to find it.

patient survey on Fox Foundation website

I neglected to say...
 

Thank YOU, Dr. Rogan!

Jean

Dr Rogan's bio
 

at this link

A problem of design?
 

I looked over the bios of the scietific advisers while I was there and was a little dismayed. Of the two dozen or so, I am sure that most are good folk but there were several with conflicts as employees of Big Pharma. Most disturbing, however, was the total dominance by neurologists? What if, as looks more and more likely, PD is not strictly neurological? No immunologists? Endocrinologists? GI guys? Anyone up on Carvey's work on pre-natal immune response? Do they know of our stress sensitivity? The role of gut peptides? No matter how professional you are, if you don't know the questions then your answers will be incomplete.

spreading the word
 

I have posted the survey link on the PD Pipeline site home page and sent it to Bill Bell, who I think will put it in the NWPF newsletter. With a little help from everyone, we should be able to spread this link far and wide. Also contacted Tom Isaacs and asked that he pass it along in Europe. Lee, if you read this, maybe you could start the ball rolling in Australia.

Each of us could send it out to our personal email list. Dr. Rogan are you sending to the PD organizations, like PAN, PDF, NPF, etc.?

Dr. Rogan, I've received mixed reactions about the questions involving us helping investors and funders. I'm sure Perry Cohen could answer this question at more length than some of us. There are patients in every area, but I'm wondering if the average patient has a solid grasp of how he/she can play entrepreneur. Unless one is a patient and an entrepreneur....lol. I would hope this isn't a prerequisite to some type of participation. I understand that money determines everything and MJFF does it better than anyone. It's a different type of expertise that many of us here have to offer tho. I don't think we ever claimed that we could bring in lots of money, but who knows - if we send the link out enough, the survey might bring in a jackpot or two or a hundred.

paula

bump
 

Bumping and hoping you are responding in numbers, regardless of how you may feel about it one way or another presently. This is a start. Advocates need your voices here.

thank you,
p