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Author Topic: Awareness Promotion Brainstorming and Success Stories  (Read 45943 times)

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fubar

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #150 on: August 10, 2010, 06:45:08 PM »

SSmithe

I feel the same, I believe those of us that suffer from this have to bring this to the public. It is definitely an awareness factor here though. How many men are going to runaround with blue shirts to save penis? Though not appealingly for obvious reasons I would because I have balls.

I support you in your voice that a fund needs to exist for peyronies disease. I spent a great deal of time trying to find a research organization but came up with nothing.It is not considered an issue in the medical community. I am sure there are those that do have sympathy for our condition however.

I for one am thinking on the line with you we do not have a life time for an answer and the young men that can't experience a sexual encounter because of this is a tragedy.

Fubar
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ComeBacKid

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Peyronies treatment not profitable in the market
« Reply #151 on: August 11, 2010, 08:11:29 PM »

Fellows,

You must of not read some of my past posts and the dire urgence in the mass mailing project to recruit more members.  We have almost 4k members, whos going to invest tens of thousands in a product to cure us when they can't even break even on their investment?  This is the simple logic behind our problem of having a "rare" disease.  We had 102 new members in both June, and July on the forum, up a good bit from last year at the same time period.  We are lucky such things as frozen shoulder, and DC exist, or we'd really be out of luck.  Its all about money, and numbers, until we can get our numbers up, you won't see much research action in Peyronies.  With people laid off and the recession very few people have money to give to non profits and charities, I'm hounded by phone calls weekly, and get three new credit card offers per week.  Giving is at an all time low, and that means peyronies giving is at an all time super duper low.  I'd suggest my friends, you pick a territory, stuff some envelopes, and start mailing in bundles... Perhaps you should write the group of billionaires who are giving away half of their money to charity, did you see that?  Buffet, Gates etc. if we could get a 500k or 1million dollar donation that'd be real nice! 

Comebackid
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ComeBacKid

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Mass Mailing Project Update- 9/7/10- First Quarter Update
« Reply #152 on: September 07, 2010, 09:16:26 PM »

Just wanted to give an update on the Mass Mailing Project.  Currently as of 9/7/10    I've sent mailings with PDS make do business cards to 421 urologists.

Comebackid
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ComeBacKid

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September 2010-Record Enrollment for New Registrations
« Reply #153 on: October 02, 2010, 09:49:46 PM »

Hey guys just wanted to point out that in September we had 121 new members sign up for accounts on the forum.  This is the most we have EVER had since starting this forum in 2006. With 30 days in the month that means we averaged 4.03 new members per day signing up for an account.  Everyone who has participated in the mass mailing project and other outreach projects keep up the good work.  If anyone is looking to volunteer for a project or has an idea send me a PM.

Comebackid
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fubar

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #154 on: October 05, 2010, 10:05:25 PM »

To all my brothers

Last month I came across this web sight created by someone sufferingPeyronie's.(WWW.CUREPEYRONIES.NET/. I gave it a minute because of the silly home page with a giant penis float seems China celebrates the penis every year for some reason.Any way from the head of the penis to the left you will find the word links in stripes of brown if I remember correctly.Hit links and you will find a list of phrases. One will say something about nih having money for research.

From what I read the office of rare diseases takes apllicants for research for rare diseases about this time of year and Peyronie's qualifies as one.


It is my guess that you have to be a researcher to obtain the grant I do not know the logistics.
It did take me a while to find some of the information. I jotted some numbers down including their branch (office of rare diseases).

Haven't done anything with this information but the knowledge that funds are available should make us push towards auxilim and other drug makers or researchers to apply for these funds.

I'm sure they know about them but are applying for other diseases we really need to make noise and find a voice.


Fubar

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newguy

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #155 on: October 08, 2010, 04:06:04 AM »

That's a great achievement ComeBackKid.  So many more peyronie's sufferers are learning about the site, and I feel that the knowledge base here is making a real difference for people, often with few other options in terms of support. We will keep going from strength to strength and when further advances and breakthroughs in treatment occur, we will be ideally placed to inform thousands of registered members and unregistered visitors of them.
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ComeBacKid

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Record Registrations
« Reply #156 on: November 02, 2010, 04:00:48 PM »

Congratulations on the hard work guys.  Our forum posted a record number of registrations in October of 139 new members, this was 4.5 new members per day.  This is excellent for the growth of our forum. 

I also would encourage you to check out the Dr. Werner post for trials in the nyc area, he is new to our forum and posted in our PDS Library Resource section, we are trying to get him moved to the proper area, please give him a warm welcome, and feel free to PM with questions about his trial.

Thanks,

Comebackid
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fubar

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #157 on: November 02, 2010, 08:32:18 PM »

Comebackid

Wow! You and those that have worked on the mass mailing project have made a great impact on the awareness front.Nobody can deny the member growth from the time line of the mailing initiation. It continues to progress month after month and almost Twenty new members than last month ( I believe) ending at (139) new members. Obviously this is due to effort and a push and uro's are passing us on as a place to seek mental and physical therapy or just comfort as they do not have much to say as we all have experienced this.

But to have a doctors office ask for candidates for a trial phase on this forum is unheard of so this is further proof that our voice is being heard.

I would like to thank Comebackid and all those that have made movement in the effort in awareness. As it is working well.Everyone here being a member should take a look at who is working for you as it is many not just one.

I also would like to thank all the members for sharing their experiences and being brave enough to be here and fight. With out our numbers we are nothing.Last of all I would like to thank OlDMAN formally and foremost for all his help and guidance.

Each and everyone of us are important no matter the damage we are suffering we have to fight for all of us that is what the (bottom line is)telling me. Oldman uses that alot I guess what I'm trying to say is we are all in this together we are brothers lets figure this out!

Fubar
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ComeBacKid

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Re: Fubar
« Reply #158 on: November 04, 2010, 02:00:51 AM »

Fubar,

Thank you for your kind words, indeed there are many of us working hard on the forum to make it the best peyronies support group in the world.  Our growth will propel us to legitimacy with the big pharmacutical companies, and give us a loud speaker to yell through and get someones attention. Hopefully more people will pitch into the forum as we have quite a few administrators,moderators, and others working hard on the behalf of all sufferers.

Comebackid
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ComeBacKid

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Mass Mailing Project- Second Quarter Update- 11/19/10
« Reply #159 on: November 19, 2010, 03:24:29 AM »

Just wanted to give an update on the Mass Mailing Project. This is the second quarter update, its slightly early, but with the upcoming holidays I will be away from the forum. We've seen great growth lately and have a string of months of over 100 new registrations, including last month with the most new registrations in the history of the forum.  Currently as of 11/19/10 I've sent mailings with PDS make do business cards to 462 urologists.

Comebackid
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ComeBacKid

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Re:JKWerner
« Reply #160 on: November 19, 2010, 01:36:26 PM »

JKWerner,

Please tell us more about the investigative drug you are studying, perhaps a link to the doctors office, if he has a webpage etc... The more information you can give us the better!

Comebackid
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ComeBacKid

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Mass Mailing Project Update- 2/12/11
« Reply #161 on: February 12, 2011, 12:23:04 AM »

Just wanted to give an update on the Mass Mailing Project.  Currently as of 2/12/11   I've sent mailings with PDS make do business cards to  486 urologists.  We had record enrollment for January, with a 154 new  members, averaging 4.96 new members per day. Our hard work is paying off, everyone keep up the hard work!


Comebackid
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newguy

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #162 on: February 13, 2011, 02:46:12 AM »

Almost 500 urologists! That's out of this world :). I contacted a fair few UK urologists in that undertaking a while back, but I suppose it's a very small territory in comparison. I tried to concentrate on practies that specifically mentioned dealing with peyronie's. There's certainly more brits here than previously, so maybe some of the urologists did forward their patients to the site. I feel that the community is becoming more connected and well known, and the registration numbers support that. This really the only forum/community out there for men struggling with peyronie's disease as so all efforts to spread the world, make a real difference to the lives of those suffering, especially those getting the old "take Vitamin E and go home" approach.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #163 on: February 24, 2011, 01:22:51 AM »

Hey Thanks Newguy, its nice to know my efforts are appreciated, I'm not looking for cash, or fame, but a little recgonition is always nice, I'm doing the best I can with what I have, it seems to be helping as our enrollment of new members is sky rocketing on this forum.  Every letter helps and counts, keep up the work in the UK, it costs me double to mail to the UK, so I can send two letters here, vs only one to the UK for the same amount of postage. Having others mailing over seas is helpful to save us money on postage, I know blade was doing some mailing in the middle east area, probably an area where there is no public forum to talk about sexual conditions without ridicule.  I'm excited with our growth on this forum, and I hope we grow so no research company, doctor, or organization can ignore our letters, that is the goal anyway.  We are the voice representing all the men suffering worldwide, and together we are more effective then on our own.

Comebackid
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #164 on: March 05, 2011, 07:17:18 AM »

Comebackid,

You work is commendable to say the least.  I appreciate your willingness to pitch in and make a difference on past projects.  If we one out of every hundred members put fourth the effort you have put fourth, our success would be astounding. 

Thanks

Hawk
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Hawk - Updated 10/27/18 - Peyronies Society Forums

ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #165 on: March 08, 2011, 12:04:51 AM »

Thanks guys, I appreciate the kind words.  Hawk, I've often thought like you if we had more willing hands how many projects we could of accomplished by now.  The good news is I am getting more individuals PMing me asking me how they can help, and all the new faces on this forum is exciting. Our forum growth is now averaging over 5 new members per day consistently, this is remarkable. I'm continuing to work on this project as much as I can, I just got done stuffing 36 envelopes for the entire state of Texas tonight. Our next project idea is to write a formal letter on behalf of the PDS to Auxilium sometime this year, regarding xiaflex information.

To all of you who have been emailing me asking me what they can do to help, if I don't get back to you immediately I will within a week at the max, please be patient. All we need is for people to pick a state, city, or region and find and list doctors, and send envelopes with our Mass Mailing Project Letter and make do business cards, or the business cards steve created for us.  Giving the urologists business cards to hand out as well is vital because then they won't just sit our letter on a desk, but will have things to hand out to disgruntled patients.  

Additionally, if anyone else has any other ideas they would like to share, please feel free to post them here.

Comebackid

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ComeBacKid

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Mass Mailing Project Update- 5/9/2011- Quarterly Report
« Reply #166 on: May 09, 2011, 08:15:00 PM »

Just wanted to give an update on the Mass Mailing Project.  Currently as of 5/9/11   I've sent mailings with PDS make do business cards to 521 urologists! We had 205 new members in March, averaging 6.61 new members per day.  We gained 198 new members in April, averaging 6.6 new members per day.  

Comebackid
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chipspradley

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #167 on: August 14, 2011, 10:10:20 PM »

That's a great achievement ComeBackKid.  So many more peyronie's sufferers are learning about the site, and I feel that the knowledge base here is making a real difference for people, often with few other options in terms of support. We will keep going from strength to strength and when further advances and breakthroughs in treatment occur, we will be ideally placed to inform thousands of registered members and unregistered visitors of them.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #168 on: August 15, 2011, 01:10:59 AM »

Thanks Chips,

I'm getting ready to do another batch of letters probably 25-50, I won't stop until I complete the entire United States.  We sent a hell of a lot of letters out and our growth rate seems to be increasing nicely.

Comebackid
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ComeBacKid

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Mass Mailing Project Update- 10/10/11- Quarterly Report
« Reply #169 on: October 10, 2011, 09:53:26 PM »

Just wanted to give an update on the Mass Mailing Project.  Currently as of 10/10/11   I've sent mailings with PDS make do business cards to 546 urologists!

Comebackid
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ComeBacKid

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Mass Mailing Project- Quarterly Update- 1/1/12
« Reply #170 on: December 29, 2011, 03:15:36 PM »

Hey guys, I know this is early, but I wanted to give an update for the new year, thanks to everyone who has helped with this project, we hope to finish this in the new year, everyone keep up the good work!  Currently as of 1/1/12   I've sent mailings with PDS make do business cards to 570 urologists!

Comebackid
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Erik

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Re: Mass Mailing Project- Quarterly Update- 1/1/12
« Reply #171 on: May 23, 2013, 12:50:44 AM »

Hey guys, I know this is early, but I wanted to give an update for the new year, thanks to everyone who has helped with this project, we hope to finish this in the new year, everyone keep up the good work!  Currently as of 1/1/12  I've sent mailings with PDS make do business cards to 570 urologists!

Comebackid
Did you give up?
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james1947

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #172 on: May 23, 2013, 03:05:31 PM »

Hi Erik

Do you want to take over the project and to continue it?
It will be very helpfull.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
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Got amazing support on the forum
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