Questions to the foundation

Science PFS Research
#1

More than a month ago I have proposed to the foundation that they could send out an email in which they inform ALl members registred on the forum that there is a study at baylor college of medicine and that they are still looking for more than 10 people. Didnt happen.

I myself also want to participate. Called 2 times, wrote 8 emails already to baylor college of medicine. Unfortunately they havent been able to shedule me until now… In more than 2 month time they were not able to gibe me an appointment.

Meanwhile, whats the foundation doing? Shouldnt they organize and try to find people willing to participate too?

i really think both the foundation and baylor college are incompetent. This is a very important study, but everything moves at a very slow pace.

Im not participating at the study because people are incompitent. Thats ridicuous.

#2

Thats why im not donating money to the foundation. Basic stuff is not being done here. Recruitment of patients …

#3

The idea was worth raising. Mew replied to you recently in another thread and said that he asked the PFS Foundation. They said that a mass email isn’t needed at this time. Or words to this effect. I don’t know why not. But it is safe to assume from their track record that they know what they are doing.

Have you let Awor know about your problems with recruitment? He asked to be PM’d if there’s an issue.

#4

You ramble on about this so much, you must’ve missed the mass email the foundation sent informing patients Baylor College of Medicine is still recruiting. They even gave you the contact information. Did you email the right person, or did you just email some random person and still hope for a response? I participated in the Baylor PFS research study and had zero problems. Are you sure its not you whos incompetent? Have you done anything productive? Do you really think you have something to gain by constantly nagging? You can stop telling others to do your great “ideas” for you now.

#5

Thhere wasnt a mass email!

The first thing when i called baylor was that the woman told me that she likes german sausage…

Nothing wrong about that, but her tone of voice and the fact that she sounded like an amarican hyperactive highschool student, didnt make it seem very professional.

This was confirmed now, because my appointment hasnt been done yet. As i said, i called 2 times and wrote about 8 emails.

Its really laughable…

The foundation doesnt do anything professional in recruitment. Is pretty worthless in that deparment at least. Alrhough they have powerful tools at hand

The situation is the wrong way around. Pfs victims should not be begging to get sheduled… The baylor college should be begging to get us to fly over ( also foundation)

#6

It was in the annual address you didn’t read. You can stop making silly demands now.

#7

I dont think that every user recieves the annual address. I didnt for example.

The only one silly here is you because you think that my idea is shit although clearly its not.

Keep rejecting it and we will progress at the speed of a turtle.

Thanks.