Approaching Universities

General Discussion Media & Awareness
#1

Hi everyone, I just wanted to throw an idea out there. A lot of efforts have been made regarding media awareness and on a whole, I would say they have been very successful. I think if you type in Propecia you’re definitely going to see severe side effects pop up first which was not the case even a year ago. But, in terms of getting research, accurate diagnosis, and possible treatments, I think we should start focusing on contacting big research universities. For example, here in the US we are going to different doctors all over the place. If we all concentrated on contacting doctors and researchers at a handful of big universities, maybe they will pick up our situation and actively look into it.

I am proposing all of us here in the US to contact the urology and endocrinology departments of, for example, Johns Hopkins (considered one of the best urology departments), UPenn, and Boston University (where Dr. Traish is). This way, doctors/researchers will realize the volume of people suffering from this condition and will be more likely to invest time/money into this problem. I believe this will be productive and likely to work because our problem will advance research in genetics/epigenetics, urology (prostate cancer as NYScientist mentioned), and endocrinology. Why don’t we decide on a few places and then we can start calling and mass e-mailing institutions.

I know research is being conducted abroad (thanks to Awor), but the reality is that that the US is probably the most advanced country in terms of scientific research (and getting the resources for that research). Please respond with suggestions and please no bickering or unproductive comments.

#2

Don’t limit yourself to contacting just endos and uros…

I just two days ago wrote a long detailed email to the immunology research department at john Hopkins.

#3

Thank you BP for your efforts. I am writing a letter to the Johns Hopkins Epigenetics Center ( epigenetics.jhu.edu/ ). Hopefully more people could contact them. JHU seems like a good place that deals with rare conditions and is very advanced in research.

#4

Tried getting 23andme involved. No luck…

#5

Great job everyone! I am going to endocronologists in New York. To me, a copay is worth the 15-20 minutes to pick their brain.

#6

I appreciate the effort but things are already in place. We already have U.S. universities on board. Hopefully, some patient recruitment will be announced withing the next few months.

Please don’t PM me to ask further questions.

#7

The idea is for big universities to repeatedly see different people coming in with the same problem. For example, 20 guys on here all going to an endocrinologist at JHU and telling him our symptoms. That way they realize the number of people suffering from this and are more likely to take action.

Adrian Dobs, M.D., M.H.S.
Division of Endocrinology & Metabolism, Johns Hopkins University, 1830 East Monument Street, Suite 328, Baltimore, MD 21287
Administrative Secretary: Nickesha Stewart
Phone: (410) 502-6888
Fax: (410) 955-8172

Dr. Dobs specializes in male sex hormones.

urology.jhu.edu/

“Ted Schaeffer, M.D., Ph.D., and his research team discover a novel genetic expression linked to recurring and aggressive prostate cancer that could eventually predict which cancers return”
Read…

Clearly this guy has a good genetics understanding of prostate cancer, he may be helpful to us or be able to direct us in the right place.

#8

Why discourage more effort about getting more? You said “universities” unless something came up in the last 24/hrs I only know of some preliminary stuff being looked at currently, which may lead to something… but nothing set in stone yet.

Besides the more eyes looking at this problem, the faster it will be recognized, diagnosed fully, and god-willing… cured.

#9

From what I understand, they haven’t even secured funding for these studies yet.

#10

Hah, from what I heard they don’t even have the LABS setup yet!

#11

I’m not trying to dissuade anyone from raising awareness. I’m just trying to put things in perspective and let everyone know where we’re at so we can maximize our efforts. Awor said more harm than good would be done from such antics: viewtopic.php?f=29&t=6085#p50488

I can’t comment on that as a whole and I don’t want to tell anyone what to do. But please do not write to Johns Hopkins University. The head of the PFS Foundation is a Graduate of JHU. I think you’d be undermining his hard work with such antics. I think the best thing to do would be to contact the PFS Foundation first and ask them what you could do to raise scientific and media awareness.

From my knowledge of everything at the moment, that would be the most productive thing to do.

#12

Get personal accounts out there… we need more people telling their stories.

Stage another protest at Merck… plan it months in advance… as many of us as possible.

#13

I think this would be the most productive thing to do. More light needs to be shined on Merck. Tapping their $137 Billion Capital would be a more worthy effort than playing armchair scientist.

#14

Does anyone know if Dr. Abdul Traish is involved with any of the research?

#15

viewtopic.php?f=29&t=6085#p50634

#16

degreen I would say post a list of emails of hospitals here so that every body can send them emails.

#17

Im right in saying that its likely to be 12-18months before we get anything from the US universities?

#18

as AWOR said, the best thing us members can do is to write to the FDA, contact the media, and brain storm on ways to continue to raise funds, but NOT to try and talk science with universities etc., and I agree with him … lets be useful in the areas he suggested and leave the science to he and his team, which are already covering all of the scientific bases

your number one reference when contacting FDA, the media and trying to raise funds, is the PFS Foundation … use it to your advantage