PFS Foundation Website

General Discussion Media & Awareness
#61

Sent to Dr. Chew. Maybe a little over the top.

Dear Dr. Chew

My name is xxxxxxxxxx. I was interviewed by ABC News, NBC News, and CNN regarding my debilitating and permanent “side effects” from Propecia. (I used my alias, Kevin Malley, in all three interviews.) As many have told me, I have inspired several other Propecia victims to to speaky pubically about the Post Finasteride Syndrome.

On September 18, 2012, Propecia victim Will McKee will be featured on a nationally televised program with him doing a full length interview. (I will tell you the program the day before it’s aired.) In the program, Mr. McKee will describe how he, and countless thousands of other men were misled about the dangers of Propecia (finasteride). He will also describe the horrific symptoms of Post Finasteride Syndrome.

Last week, the Post Finasteride Syndrome Foundation was set up for victims of Propecia. Thousands of generous U.S. citizens have donated their hard-earned cash to help find a cure for the Post Finasteride Syndrome and to let Propecia victims know the public is deeply concerned.

During his nationally televised interview, Mr. McKee would like say that the FDA has offered to work with the PFS Foundation. In my future interviews, I also would like to say that the FDA is working with the PFS foundation to find a cure for Post Finasteride Syndrome. I’ve been told my media sources that media and public interest is growing as the lawsuits mount and the world learns about the horrific symptoms of Post Finasteride Syndrome.

I hope the FDA doesn’t disappoint the public or let Propecia victims continue to suffer as the world learns how Merck is ignoring this growing problem. Please contact the PFS foundation to learn how the FDA can help. www.pfsfoundation.org

Sincerely,

xxxxxxxx

#62

Nice letter. Once again great job.

#63

Thanks. We need to maximize our efforts with each media appearance. Mandi said on her facebook that she has one national interview coming up, maybe several others. We need to shove it in the FDA’s face and let them know people are volunteering their time and money to help PFS victims, while the FDA sits and does nothing.

#64

You guys are doing a great job!!

#65

Is there a chance that the PFS foundation will be working with a university or research institute to try experimental therapies? Could we maybe start running stem cell clinical trials? For example, try neural stem cell injections and see if that improves symptoms and go from there?

I understand that trying to figure out the source of the problem is important but we don’t know the causes or root problem of diseases that have been studied for years and have billions of dollars put into them, the likelihood that we’re going to fully understand PFS is very low. If we want to get better we are going to have to start doing experimental treatments like what Joetz is doing. Its important to note though that there are tons of varieties of stem cell treatment.

Also, out of curiosity, who is the VP of the foundation Mathew Weintrab? The other two people are the parents of that kid that died right?

Who here usually communicates with these people?

#66

Just donated. I may make it a monthly thing. I am thinking of going all out and spreading via facebook etc. Im tired of people and doctors not recognizing this and what it is. Its an embarrasing thing but I am not embarrassed anymore. I just want my life back.

#67

These are questions for the foundation itself. Contact them if you wish to inquire, however as they state, to be able to develop treatments they first need to understand the underlying mechanism(s) that are causing side effects to persist.

This is opinion and conjecture, we cannot predict the future nor what they will uncover through research. I am hopeful that some answers will be found through such research and this will help point us in clearer directions for targeted therapies.

His bio is listed on the PFS Foundation website here: pfsfoundation.org/about-post-finasteride-syndrome-foundation/

Correct, they are Randy’s parents as noted on the homepage of propeciahelp.com (Merck Hunger Strike story)

There are a few individuals in contact with them on a regular basis.

#68

Please do, the more awareness the better.

Their Twitter and Facebook pages:

facebook.com/pfsfoundation
twitter.com/pfsfoundation

Youtube: youtube.com/pfsfoundation

#69

Yes guys blow this up, tell everyone you know friends and family. What’s worth more to you? Some potential embarassment or your health? Shine the light of truth down on PFS for the world to see and even Merck won’t be able to bury their head in the sand forever!

#70

Telling friends and family isnt going to make any difference.

#71

shut the hell up oscar

#72

mew, what about a pfs foundation section?

i mean they could have at least one person that comes here to answer us or update news also in unofficial way?

i hope they could entertain some relation here

#73

don’t be so dismissive oscar

we need high morale for bear this

i was hopeless and cynical like u, but that gave me any gain at the end

#74

If your friends or family are connected to the media or medical community YES they can help…

Fact is a lot of people involved behind the scenes are in fact relatives of sufferers and not sufferers themselves…

#75

spread awarness is the main thing that we can do
post link toward PH or pfs foundation everywhere, better in medical forum/sites

whe u digit pfs on google now u see 1.640.000 results

#76

stop explaining yourself to oscar, not necessary or worth your time

#77

Who here is in contact with people on the PFS board?

#78

Anyone can contact them. pfsfoundation.org/contact/

#79

kevin u know if some of the organisation is willingly to post here in informal way?

#80

I think they want a kind of buffer… as one individual referred to it as “propeciahelp is kind of like the wild wild west”.

Be assured that these people are well aware of whats going on, from an informational standpoint media attention is still the number one priority as it will help generate public/scientific/medical interest in the issue. Right now we need more insitutions interested in the problem… say if there was $300,000 in the fund but no interested researchers that wouldn’t help us much.

Also, public/private funding may become available as the knowledge of the problem grows and becomes more widespread…