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Author Topic: Awareness Promotion Brainstorming and Success Stories  (Read 45495 times)

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Larry H

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Awareness Promotion Brainstorming and Success Stories
« on: August 10, 2006, 10:51:22 AM »

We have now placed a web site page under the Advocacy/Awareness heading on the web site. I would like to ask all members to read the page when time allows, as we are starting a new effort to promote awareness and to recruit Peyronie's advocates. We are asking for your thoughts and comments on approaches to increase Peyronies Disease awareness.

I view the PDS as an organization with two primary goals. One of course is Peyronies Disease support. This area of support includes support of the newly diagnosed, support for existing patients and partners as they struggle to live with the disease, support through Peyronies Disease education, and support through the posting of news and current events concerning Peyronie's disease, just to name several.

The second goal is advocacy, and that is still in it's infancy. Advocacy and activism take the PDS from a simple support forum to a formal organization that supports patients and promotes the advancement of understanding and treatments of and for the disease. We set up the Peyronie's Advocacy Group shortly after Hawk and Joshua set up this forum. The membership was small and the PAG had little success. However, the explosion in growth of the PDS has supported the development of activism as a natural event. Our efforts within the PAG are really now aimed at focus and direction.

Since I tried to identify the need for awareness on the web page I won't go into that again here. However, I will say that we must be careful to understand where our strength lies and where to focus our efforts. We can't do research, we can't develop drugs or treatments, but we can stand up as a group and educate the public. That should be our focus.

In the past several months I've noticed an ad on TV placed by a drug company for a drug to treat "Restless Leg Syndrome". Now think about that for a minute, a drug company is spending probably millions of dollars to promote a drug for restless leg syndrome. I'm sure this is an unpleasant problem, but does it compare to the devastation caused by Peyronies Disease. The same can be said of the drug advertised to treat toenail fungas. Don't these conditions pale in compairson to a condition that destroys relationships, marrages, families, and perhaps even lives. What more graphic example could we have for the need to promote the advancement of Peyronies Disease awareness. To educate the public, the pharmaceutical companies, and the medical community.

I ask each of you to give this some thought and post your thoughts, comments, and ideas, no matter how simple or bazaar. At this time Blink is working on a hand out design as one step in our awareness campaign. Information will be posted here as this effort continues to develop. WE want more ideas that will develop into workable programs, and we want volunteers to work with the promotion of awareness. We will need some who are willing to be open with their disease, but there will also be work for those who for whatever reasons wish to remain anonymous.

Please look for the topic heading "Thoughts and Ideas for Awareness Promotion" and post there. Let's get the ball rolling.

My Best to All,

Larry
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Blink

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #1 on: August 10, 2006, 11:57:15 AM »

Very well put Larry. We can use some behind the scenes help from people who wish to keep from being in the headlights. I'm not that great with graphic arts, but I have a really vivid imagination. If someone out there is good with graphics, and has programs on their computer wishes to help me with designs for letterheads, handouts, business cards, and the like, please contact me. We can exchange emails and send ideas back and forth to one another. If you need some programs such as microgrfix, or others let me know and I'll gladly send them to you. Together we can get the community involved to find treatments and a cure for peyronies. Keep the Faith...Blink
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #2 on: August 10, 2006, 09:29:41 PM »

Larry H,

Well done, the only suggestion I have to add to your written piece, is check out the APDA site(ohmygod I said APDA... don't shoot anyone :o) on it, they have a study or a report showing how much people with peyronies have spent on anti depressant treatments, its like millions of dollars.  Their point is a message to big pharmacutical companies, yes we will spend big bucks! 

As far as what members can do, I believe we need to get some volunteers, that can remain anonymous, and we need to draft a letter and start a nationwide mailing campaign to urologists who deal with Erectile Dysfunction and peyronies, with the brochure that Blink comes up with, and some business cards.  I talked to Blink last night and he agreed including business cards would be a good idea, they are cheap to produce to. I believe Hawk already has a basic card somewhere that he has showed me.  I strongly believe this mass mailing campaign is crucial, first to get a brochure to informat patients about peyronies, and secondly to draw more in to our forum.  Most urologists don't know crap about this disease and will probably view our brochures and cards as a lifesaver, gladly handing them out.

As far as Peyronies Disease awareness goes on TV, Blink said he has some connections, I don't know if we can get air time, or something like that.  Perhaps we need to contact someone who has a sex talk show, like that lady from canada that everyone watches and try to get our information out through her site or on her webpage. Sex talk shows, radio shows, a segment with Blink talking about peyronies, who knows, I don't know much in this category.  These are my initial thoughts, I will add things as I think of them, just brainstorming for now.

ComeBackid
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Blink

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #3 on: August 11, 2006, 01:19:03 PM »

Good News!!! The cavalry has arrived! I worked with a graphics art specialist when I was helping out the Pa.Coalition Against Domestic Violence. I contacted her today, because my computer crashed and I lost all of the stuff that we previously worked on together. I wanted to use some of the items and make them up for this organization. She said that she had saved everything from before and that she would email it all to me. I am elated that I will get all of that info back. Here is the best part: After talking with her about my new advocacy campaign she offered to do a letterhead, logo, business card, and layout the handout that I'm laboring over! She's doing it free of charge! She had no idea peyronies existed. Now she's basically onboard with us, but in the background. I'll tell all of you something, the ladies that we have onboard should be cherished. I know that when a woman takes up a cause and believes in it, she WILL get heard! I've seen the ladies in action on domestic violence. We men sometimes are a bit wishy-washy when it comes to advocacy, but not the girls. Thank You Ladies for standing with us! Keep the Faith...Blink
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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #4 on: August 11, 2006, 02:56:41 PM »

That sounds great Blink, I'm looking forward to seeing the draft material.

Larry
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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #5 on: August 11, 2006, 02:59:05 PM »

ComeBackid;

Brainstorming is good, as that's the way to get the job done. I like your direction.

Larry
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #6 on: August 11, 2006, 06:07:02 PM »

Today I replyed to several men on a medical Healthboard website that were inquiring about Peyronies Disease. I have been a member since last year for previous medical issues I was facing. Periodically I will go there for any medical treatments-suggestions for me, my family or friends.Here is the Post.
O.K. Here's the real deal.  Many of your questions about Peyronies Disease can be answered on a forum that I'm a member of. You will have to register and please fill out the history form . This gives us more info on how you possibly can be helped. It has all subject matter, including treatments, research, local Urologists that have the background,(I highly recommend finding one. Most don't have a clue), psychological components, surgical techniques, and a world of other knowledge that other sites might not be able to provide. Many men on this site are very knowledgeable, caring men that offer suggestions, understanding, intellectual debate, and friendship that no other site I have found offers. We are gathering info on the percentage of men and how it affects their lives and their spouses/girlfriends and will start forming more localized support groups in all areas of the World. We need to bring this out in the open to get more progressive research done on this in order to find a cure one day. The administrator has this site well organized/managed and will not tolerate abusive language, negative remarks or direct attacks on other members. So if any of you men want to find a positive webpage and helpful men in the same situation that will become your brothers in this fight, then visit and register at PEYRONIESFORUM.NET.
Thank you for reading and Good Luck--Zigwyth-:)
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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #7 on: August 14, 2006, 05:50:20 PM »

Folks:

Take a look at the post from Zig below. This is exactly what we need, creative thinking, outside the box thinking. There are a lot of ways to make the public aware of, and better educated with the disease.

Great job Zig.

Larry

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Blink

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #8 on: August 14, 2006, 06:05:47 PM »

I've been thinking of taking the handouts to the local V.A. Hospital. As soon as the designs come back and are printed up, I'll take some over.       Keep the Faith...Blink
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BLBC

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #9 on: August 15, 2006, 04:08:33 PM »

Today I sent letters to Oprah, Dr. Phil, Montel and posted a show suggestion at the Dr. Drew forum on Discovery Helth. Basically I took Susan's letter and edited it a bit. I would love to know how many urologists there are in the US, anyone have a clue where to start to search for that information?

I realize that you understand passion and commitment. I want to share with you a very special passion I have recently acquired. This is not a passion I choose, but rather a stunning development that was delivered, unwanted to my family and myself. This passion is shared by uncountable millions of men and their partners. These men are uncountable because they suffer from a “disease” that most are frightened to talk about with their wives and doctors. This disease is colorblind. It does not care if you are single, married, straight or gay. It does not matter if you are a virgin, in a committed relationship or sex addict. When it hits, it hits unexpected and with such force it drives loving men away from their partners into a world of physical and psychological horror that is unequal to any.

I am referring to Peyronies Disease. This disease causes a sudden deformity of the penis.
Imagine waking up one day and feeling a lump or dent in your penis and within a very short time (weeks to a few months) it is bent and twisted into bizarre configurations or angles of more or less than 90 degrees. Sex with your wife is impossible, at times even masturbation is not viable. Erections, if possible are painful. Imagine going to a doctor only to be told “take some vitamin E and come back in 6 month or a year.” Will the vitamin E do anything for you? No. Will Peyronies Disease go away in a year? Not likely. There is no cure and sadly no universally agreed upon best treatment.

While all urologists know of Peyronies Disease, there are very few urologists in the United States who are truly educated in this disease. A leading authority on Peyronies Disease is Lawrence Levine in the Chicago area. A few of the other Urologists who specialize in Peyronies Disease are: Martin Gelbard Burbank, CA,Gerald H. Jordan, Norfolk VA, Tom F. Lue San Francisco CA, Anthony M. Sliwinski Richmond VA.

Peyronies Disease is a "Closet disease" just as Erectile Dysfunction use to be before Mr. Dole and others made it a household word. Peyronies Disease carries the same stigma that Erectile Dysfunction use to have. This disease like Erectile Dysfunction devastates lives, marriages, and families. Acute depression affects the men and their partners, sufferer’s talk about ruined lives, guilt, depression, loneliness, isolation, and even suicide. Peyronies is said to be "an old man's disease," the same misinformation and myth that was purported about Erectile Dysfunction. Peyronies affects men from 18 to 70 and beyond.

Although, data is in short supply and not consistent Peyronies affects about 1% to 7% of the male population of the United States. As of the 2000 census there were 138,371,753 males in the United States. Taking a conservative estimate of 1% to 3% you are still talking about from 1,383,717 to 4,151,152 men in the USA alone afflicted with the disease. Yes, men in the millions suffer from this disease.

Why am I telling you all of this? I am hoping that you can help bring Peyronies Disease out of the closet Peyronies sufferers and their partners are very disheartened at the lack of effective medical treatment that is available to them, and at a lack of research that is being conducted by pharmaceutical companies. Peyronies Disease sufferers and their partners want to make the pharmaceutical companies aware that if they could develop a product which would cure or at the very least improve the devastating effects of Peyronies Disease that there would be a "Large Market" for their product, not only in the United States, but in other countries as well.

If you want to see what Peyronies Disease sufferers have to say about Peyronies Disease go to: http://www.peyroniessociety.org  What you are going to read there is about desperate people who would be willing to pay almost anything to find relief from this disease.
       
On a personal note, my husband, as you may have suspected is a Peyronies victim, so on his behalf and for all those millions who suffer from Peyronies, I am asking you for your help by bringing this disease to the attention of the public and the pharmaceutical companies.

Thank you very much for all you do,


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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #10 on: August 18, 2006, 01:28:57 AM »

Zig and BLBC,

Good work, way to be PRO active and do something positive, Zig even if one person comes over from that we got something accomplished.  BLBC, way to get aggressive I like it, when women fought to make breast cancer known they were not quiet at all, they were loud and look how far they have come. 

In the think tank under internet outreach, you can add links to sites you think we should add our pds website link to.  In time I will be contacting ones I feel appropriate but always appreciate the help in adding more links to pursue.  Zig I sent you a PM and when I get home perhaps you can help me in this arena, for now I'm not going to be able to do any work on that project. The goal in the internet outreach is to increase our google ranking by getting our site on other credible mens health related sites, and simply get our name out there to draw more people to our site.  I don't know if Hawk is planning on taking it out of the think tank which only certain people can see or not, by doing this we could get more peoples input.

I also still strongly believe in the mass mailing campaign idea, including a brochure produced by blink, some business cards which we already have somewhere on the site, and a drafted letter, we would target Erectile Dysfunction specialists and doctors who deal with peyronies.  A team of members like two or three could work on this and be ANONYMOUS while doing so, simply mailing the letters out, the only costs would be envelopes and stamps, I'm sure Blink won't charge us for his copies of the brochure!   ;)

I think this idea is critical, and I'd love to lead this charge but won't have enough time come fall with the project I already have.  A small team would be more than adequate to get this job done. What we really would need would be for about two or three volunteers to take this project on, perhaps Larry could help out and help get a list of urologists and doctors we want to target in our mailing campaign started awhile.  As the team is made others can add their input and add urologists and doctors to the list to hit with our campaign. We don't need to hit every single doctor in every town, this isn't possible, but maybe aim for the big cities and hit up some smaller towns.  Perhaps with Larry's lead and organizing the campaign, and volunteer efforts this project could easily be accomplished.  For now though, good work on everyone else reaching out to the public in any ways you can think of, don't give up, keep working hard and good things will happen for us.

Good work people!
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #11 on: August 18, 2006, 01:38:33 AM »

I too am impressed by the work of so many.  BLBC has set a high standard in a short time.  I salute you for your work.  The same is true of Blink, ComeBackid, Zig, and others working on awareness topics.  This is the beginning of a Peyronies Disease organization as a Peyronies Disease organization should be.
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #12 on: August 18, 2006, 02:32:40 AM »

That letter is awesome! We are blessed to have you women with us. Not only are you working to get some action for your men, but you have adopted a bunch of other husbands along the way. This awareness campaign is still in it's infancy, but it grows stronger every day. If this keeps up at the same pace, can you imagine where we will be by next year? If Oprah, and all of the rest need a poster boy, I will volunteer to go on tv. I'm not camera shy. I've been on some shows already locally for domestic violence awareness. Keep up the great work everybody.  Keep the Faith...Blink
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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #13 on: August 21, 2006, 06:03:59 PM »

BLBC didn't just offer thoughts, she turned her thoughts into action by expanding on the action taken by Susan some months ago. You ladies are an absolute joy!

As Blink said below, I'm not camera shy either, I'll like to tell the world about Peyronies Disease. I did nothing wrong to get Peyronies Disease, it just appeared out of the blue, and I'm no more ashamed of it than if I had arthritis. If this developed into some type of public forum such as a TV show and you need help, just ask.

Larry

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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #14 on: August 27, 2006, 05:10:13 PM »

To All:

Please read the PM pasted below that I received from BLBC. I would like your thoughts and ideas on the proper person/persons to receive the letters. Typically elected officials are not bothered by this type of thing but celebrities may be, so we do want to irritate anyone.

An example of a good person would be Dr. Rosenthall who is the medical editor for Parade magazine, and contributor to NBC and Fox news. He is out of Cornell University Weill Medical Center the same as Dr. John Mulhall.

Anyway, I would appreciate your input.

Thanks, and God Bless The Women,

Larry

["What do I do with them? I have a group of ladies who, just last night, learned about Peyronies Disease. They are ready to start a letter campaign, but to whom? I realize that should Peyronies Disease come out of the closet like Erectile Dysfunction did there will hopefully be more research. So do you have any suggestions? Currently there are around 50 women, but more will help if I can only steer them in the right direction!"]
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #15 on: August 27, 2006, 08:42:14 PM »

All the networks and major newspapers have one.  Maybe worth looking at.
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #16 on: August 27, 2006, 09:49:30 PM »

When suggestions come up of places to send a letter, could we make a place somewhere that these names and addressess can be stored so that in the future we would have a list to direct someone to write to should they have a desire?    Am sure that soon with all of our head put together we will have a very long list of organizations to send letters to.   This list should be archived in an accessible place and be added to when new ideas come up.

Also,  do we have a standard letter that we can offer as a basis for people to use?  One with facts and statistics regarding Peyronies Disease? The reason I ask is brought to mind in the light that the women that BLBC is recruiting to write have very little knowledge about Peyronies Disease and should be sending a letter with at the very least basic informative information regarding Peyronies Disease.    Any individual can add to the letter but they all should have the same facts to base their letters upon.   I know that the letter that was written by Susan was good and it was tweaked a bit by BLBC.  Perhaps this letter can be posted somewhere to be used as a standard, beginning, format?
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #17 on: August 28, 2006, 09:26:20 AM »

As Christine says, it seems we do need a database of names and addresses of talk-show hosts, medical correspondants / Media medical programs, politicians, Government agencies.  This could be in the form of links to databases that already exist such as those for  elected officials, and they could include lists we compile.  Like urologist, the number can be endless so the task takes some thought. While all of these may be very positively impacted by a few letters, I think that many of these people could be negatively impacted to be the subject of a letter writing campaign.  For instance, maybe Oprah would be more impacted by 3 sincere heart felt letters from individuals than she would be from being the focus of a letter writing.  Even this I am not sure about because every letter may mean a vote from a viewer.

Clearly politicians do respond to numbers because they are votes.  The question would be what do we want that politicians can deliver and what committees have oversight over what, along with who sits on these committees?  I am ignorant of these details as it relates to our specific cause, maybe Larry is more aware of these relationships.

Government bureaucracies can often be non responsive until an elected official that holds their purse strings writes them a letter, so while letters to NIH may get action, they may get more action through a politician that sits on a committee controlling the purse strings.

NORD to my understanding is non-government but again I plead ignorance.  Which may mean one of the first steps in our data base is to post a list containing NORD, NIH etc and listing their name, a link, and a brief description about who they are and exactly how their role relates to our cause (positive or negatively)

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Tim468

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #18 on: August 28, 2006, 12:24:46 PM »

The NIH is hurting right now, as is the research community, when it comes to funding. I am not sure if reprinting this email in its' entirety is overkill, but it is aninteresting communication from my dean about the current status of NIH funding and the crisis:

RE:                              Conference Call with Dr. Elias Zerhouni, Director, NIH

 

In August, I and a number of other biomedical research leaders participated in a conference call with Dr. Elias Zerhouni, Director, NIH.  I found the call to be informative and instructive, and write now to offer the substance of that call:

 

1.         There is no question but that there has been a real decline in the NIH appropriation and its purchasing power since 2003: Success rates (number of applications funded over total applications) were in excess of 30% prior to 2003 and this rate has been less than 19% since that year.  In the five year “doubling” (1998-2002), the NIH appropriation had increased by about 15% annually, but since that time, it has been virtually flat and not corrected for inflation (3-4%/year).

2.         There has been an exceptional increase in the number of grant applications.  In 1999 there were 24,000 grant applications to the NIH, and in 2006, 48,000.  In 1999, 19,000 Principal Investigators submitted applications, and in 2006, 35,000.  Not only is the cost of each grant more expensive currently than in 1999, but clearly, demand is greatly exceeding supply.  Demand seems to be the major driver of the current NIH “crisis.”  In fact, there was as large an increase in the number of applications in the two years after 2002, when the doubling ($13.5→$27.0 billion) ended, as occurred in the five year doubling period.  (See attached slide.)

3.         Between 1990 and 1998, American research institutions invested $2.3 billion in the aggregate in constructing new laboratory space.  However, between 1998 and 2006, $15 billion was invested.  Clearly, many institutions invested heavily in new lab space and new investigators, assuming that the NIH “doubling” dynamic would be durable.  Now many institutions are facing the daunting challenge of paying for this space, with a decrease in the NIH appropriation.

4.         The greatest impact of the NIH cuts has been on young investigators, i.e., post-doctoral fellows and junior faculty, since senior faculty who have lost grant funds generally will not hire nor renew young scientists.  Therefore, the NIH is very specifically focused on this population of grant applicants since the fear is that when the NIH does recover its appropriation momentum (“in three or four years”), we will have lost this generation of young investigators.  To address this challenge, the NIH has introduced several new mechanisms:

 

                        a.)        The re-submission period for new investigators has been shortened from more than nine to less than three months.

                        b.)        Young investigator grants that are close to the pay line will be favored for awards by the Councils. 

                        c.)        The K99-R01 mechanism, which blends support for the last two years of post-doctoral fellowship and three R01 years to follow, has been introduced.  This mechanism is limited to faculty in the tenure track, and about 150-200 awards will be made this year.

 

5.         Because it is very unlikely in the current domestic budget climate that the NIH appropriation will increase substantially in the next few years, Dr. Zerhouni expects that academic medical centers will invest more of their own money, especially with respect to indirect costs.  In fact, the NIH is encouraging cost sharing between the centers, foundations and industry, and is developing specific mechanisms for public-private cost-sharing of awards.

6.         There will be fewer funds available for shared instrumentation and construction grants; the NIH’s focus is on “human capital.”  Whatever is funded with respect to shared instrumentation grants will be in support of critical new technologies with broad implications, such as proteomics instrumentation.

7.         I myself had proposed some years ago that the Clinical Center in Bethesda be considered a “national laboratory” since it is already funded by a stable line item appropriation and this large research hospital has considerable unused capacity.  I had suggested to Dr. Varmus that this remarkable facility be opened on a nationally competitive basis to young investigators who wish to train in clinical research and for senior investigators who might design and implement clinical trials to be undertaken at NIH expense within the Clinical Center.  During this call, Dr. Zerhouni stated that this proposal has now been accepted by the NIH and is currently being fleshed out.

8.         Although many people believe that a major problem with the NIH appropriation relates to the funding for the “Road Map initiatives,” the fact is that Road Map funds comprise a very small fraction (1.2%) of the total NIH appropriation.  The “Road Map” will be evaluated every three years as a function of changing scientific opportunities and scientific needs.

9.         The NIH re-authorization bill that will soon become law is responsive to an IOM report which describes the NIH as excessively large, fragmented and complex, to the extent that there is little opportunity for high-risk, cross-disciplinary and interdisciplinary research.  Since no one Institute seems able to counter this perception (which is widely held by Congress, the media and the public), the re-authorization bill will call for a “common fund” under the direction of the NIH Director, the purpose of which will be to stimulate collaboration across Institute lines and which specifically addresses high-risk, multi-disciplinary and inter-disciplinary research.  Dr. Zerhouni is hopeful that money for this fund, which could comprise as much as ten percent of the total NIH appropriation in the next several years, would be in addition to the normal NIH appropriation (whatever that is) and that monies would not be taken from the Institutes to support the common fund.  Dr. Zerhouni believes that the establishment of this common fund would go a long way toward addressing the perception of bigness, complexity, fragmentation and Institute siloism, and that in fact the creation of the common fund would increase the likelihood that the NIH appropriation overall will be increased.  (Note, however, that “authorization” and “appropriation” are not necessarily the same.)

10.       Dr. Zerhouni noted that with respect to the indirect cost rate assigned to any given institution, if it increases, then direct costs - 75% of which cover salaries - must be reduced, given a flat NIH appropriation.  Therefore, institutions must carefully consider this fact as they negotiate their indirect cost rates.

11.       Finally, Dr. Zerhouni noted that academic medical centers have a tremendous impact locally and regionally with respect to health benefits, job creation, spin-off companies, et al., and that communities and regions (and their elected legislators) must therefore recognize the current NIH economic challenge and do more for their own institutions.

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52, Peyronies Disease for 30 years, upward curve and some new lesions.

BLBC

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #19 on: September 15, 2006, 12:14:38 PM »

I have been having a conversation with a friend who wants to help us. I'll post some of communications here. I just wanted to let you all know I haven't forgotten about you and I am excited with the direction she is giving me! If there is anyone who would be willing to help on a local level please send me a PM to let me know what area your in.

I take your presence "here" means things may be somewhat better "there". You and your husband remain in my thoughts and prayers. I truly meant what I typed the other night...if we can call, write or do anything to help, please let me know.

They just have no clue whom to write!!

Then tell you what I'll do. A few years back I owned a transcription service. There are a few doctors, medical researchers, etc. here in Houston who owe me a small favor or two. I'll make some phone calls the first of next week and see if they can give me any insight as to where to start this venture to get the word out and start a research fund somewhere.

Feel free to tell me to butt out if you wish. I mean no harm and not trying to get in the middle of your life. Just hoping to help in some small way.


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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #20 on: October 12, 2006, 01:39:59 PM »

BLBC,

Good work on getting active and doing something, I'm just wondering if your still going to post your communications with your friend and what ideas you guys have brainstormed, I guess if the majority of men on this site aren't going to do squat to better our cause except complain and bitch, its damn good we have you women who will speak out and get things done.  I applaud your efforts and I'm excited to hear your friend's ideas and yours as well.  Please post them here so maybe other people can build off of them as well.  You might want to contact Blink as well and ask him how you can get involved or help, I think there may be a few ideas or projects that need filled and you seem like you'd be a hell of a candidate for the job.

ComeBackid
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Larry H

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #21 on: October 12, 2006, 05:41:46 PM »

BLBC:

I haven't forgotten you either, but as you've seen I had to ask for a leave of absence while I attend to some pressing personal Issues. My thought on a letter writing campaign is not to single out one person but to assemble a list of a number of people who are in a position to give national exposure, then have five or so write a letter to each. A letter that has been developed to allow modifications in each but convey the same thoughts. This is sort of the theory that if you throw enough mud at a wall some of it will stick (and I cleaned that up ;)).

The question is who should be on the list and just how to develop such a letter. The letter can probably be developed by listing the points to get across and let the ladies put it into their own words. The list of people to receive the letters will be a little harder.

Larry
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #22 on: October 12, 2006, 05:52:38 PM »

Larry,

What do you think of just having a signup list and anyone who wants to do something in the Peyronies Disease awareness arena can sign up on the forum for.  Then from there Blink and yourself and other Peyronies Disease Advisors can decide what our main projects are and what we want to get done.  Blink can then hand out assignments to people or projects to get done, we will have some teams of people or pairs.  I know of at least one project right now that is ABSOLUTELY CRUCIAL to the PDS that is open for a position, if no one steps up and takes it our forum won't be seen by potentially millions of people worldwide, however if no one knows about such projects how can they volunteer to take them on?
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #23 on: October 12, 2006, 09:13:20 PM »

ComeBackid,

I wish your enthusiasm was contageos.  A couple of things to remember.  Blink is filling in for Larry so it is best to direct "Awareness inquires to him during Larry's leave of absence.  Making it Blink's call takes the obligation off of Larry to make the call and that was his point in requesting the leave.  He needs one less obligation for the moment. 

Your old project was not part of the Awareness/Advocacy group effort directed by Larry and Blink.

As ComeBackid said, those specifically interested in the Awareness campaign can contact Blink and communicate ideas and offers to help by posting right here on this board. 

As always the survey for assisting the PDS is on our website.  When I invite members to help with other projects not directly under the direction of PAG, I usually draw from that pool of members that filled out our web survey.  We have several working on various projects at this time.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Blink

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #24 on: October 18, 2006, 07:09:11 AM »

Hi everybody! I was involved in some family matters, so I wasn't very active online lately. I would like to put together a letter to get out to the docs. I have some ideas of my own, but would like to hear from my brothers and sisters with theirs. We're in this together, so I figured we should put together a letter together. I will probably take a little from each and add my own thoughts. I will then run it by the board for their approval. After we do the doc's letter, I will be asking for other letters to be used for the drug companies and media. Thank you so much for your thoughts and input. Keep the Faith...Blink
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #25 on: October 18, 2006, 07:50:13 AM »

Blink,

Hows that brochure coming man?  If I recall you said we could use that as a faded background with info on it.  A letter would be good as well, and I don't know but I was thinking a card that hawk has already designed, this can be given out to patients as well.  We can mail these things(whatever we decide to include) out to a list of doctors we look up, we should target peyronies doctors, there are to many that deal with Erectile Dysfunction to hit them all.  We should also try to hit all regions of the United States.  Someone should try to make a list in a word document and research some doctors and record names and addresses, don't know if anyone wants to volunteer to do this.  Blink I can help you with the letter, if you start it I'll proofread it for you and add on.
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Blink

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #26 on: November 22, 2006, 10:12:21 PM »

I will be putting together some business cards and letter heads for people to copy and hand out to docs or people who might want some info about peyronies. Look for these in about a week. I will put them out in word, so they will be easy to copy. If anyone does not have the ability to make copies, email me and I will send some out to you. I have been away from the site for a bit, tending to some other affairs. I'm back now, and want to get the ball rolling. Keep the Faith...Blink
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #27 on: November 26, 2006, 02:18:14 AM »

Blink,

Glad to see your back with energy my friend! If everyone took some of these letterheads and business cards and mailed them to their own urologists this would make an impact.  I copied 20 business cards and a hand written letter and mailed it to a local urologist I had seen.  He called me up personally and thanked me and said he will hand them out to his patients, he also said he would log on the forum and look around, he seemed impressed and very supportive.  Lets encourage everyone on here to copy some material that blink posts and send it off to their urologist they are seeing, these small steps can add up to a big gain overtime! Lets get active here people, this takes 15 minutes out of your day!!!!!!!!!!!!!!!!

ComeBackid
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #28 on: January 22, 2007, 07:40:46 PM »

Any news on the Peyronies Disease awareness front?  I haven't seen much activity on this board with virtually no one posting, has everyone given up already?  Any new plans or ideas in the works here? 

ComeBackid
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #29 on: January 23, 2007, 01:35:56 PM »

ComeBackid,

We operate on the unselfish service of volunteers.  Our greatest struggle is to find self-starters that can get some direction from the advisory board, formulate a plan, get approval for the plan, and then launch it and give periodic updates.  We have no carrot to offer, and no coercion, only the desire to make a difference with a positive movement.  When someone offers it is difficult to know if they will stick with it or lose interest.  The few that serve have to somehow maintain a life and not try to do it all.

Blink has not logged on to the PDS for over a month.  Hopefully all is well with him.
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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 #30 on: January 24, 2007, 02:29:28 AM »

Hawk,

Unforutantely service is something we lack in this country, I've found it to be quite rewarding.  One would think that the slow destruction of ones penis would be enough to motivate them to volunteer to help out in anyway... but who knows.  At this time in my life I'm so busy I can't really take up a project or volunteer to help our cause.  Perhaps in the future ideas that the advisory board approves or is thinking of approving could be posted on here for non-binding member imput, and comments.  I did not notice Blink has not logged on for over a month, I to hope all is well with him.

ComeBackid
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #31 on: March 31, 2007, 07:48:15 AM »

I just found the site when I was researching info on Potaba and I am impressed with what you have started. I am willing to help in any way I can so put me on your list of volunteers to do something. The secret to success with any volunteer organization is to give everyone somethng to do that is more than just attending meetings or viewing postings. Let me know what I can do. I am a retired professor so anything around educating people would be easy for me to do.
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Tim468

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #32 on: March 31, 2007, 10:46:29 AM »

Welcome drlud!

BE careful what you wish for - you may get it!

WElcome again.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #33 on: July 12, 2007, 09:38:35 PM »

I decided to post this encouraging news here since it directly relates to our ability to get the message out and to reach those searching for support.

I am excited to have recently received an email from a well-know psychologist and professor with a prestigious center for human sexuality.  He indicated that he spent some time on our website and forum and that he valued our contribution to the the Peyronies Disease community. He extended thanks to all of us for that contribution.  He also said he would make it a point to recommend our site to his patients.  He also registered as a member.  I have no reason to suspect he desires anonymity but until he grants direct permission to be more specific, I provide only this general comment.

I am also happy to report that while we have always been at the top of the heap on Peyronies Disease searches on MSN and Yahoo, we have been lagging with Google.  Over the past months we have moved from page 17 on a Google search of Peyronies Disease to page 3. A search with quotation marks "Peyronies Disease" ranks us as number 7 on page one out of 60,000 hits.  We also make page one if you combine other terms like women, treatment, support, or forum with a search on Peyronies Disease.

I have renewed PeyroniesSociety.org and PeyroniesForum.net for 4 more years.  We are committed to the long haul.
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ohjb1

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #34 on: November 20, 2007, 05:19:31 PM »

For those of you who have been at this awhile, is there a foundation that actively lobbies for governmental medical research for our condition?  I have spent some time on the Internet and have not come up with one.  Also, there does not appear to be any current clinical trials. 

If the answer is no, I would like to start a foundation that would lobby for medical research. (I would be willing to fund the startup expenses, such as the legal paperwork). This is the only way we will ever make progress. Verapramil does not work (I know from personal experience) and I am not optimistic about AA4500.

I work for a government agency that funds research and I know that nothing happens without money and Congressional pressure.

We would have to start from square one.  If we can get this started the next step would be to raise money and get a lobbyist. Maybe a fundraising website.

Please contact me with any suggestions, particularly if you can volunteer some time. From reading the medical literature, nothing is happening and life is short. Happy Thanksgiving.   

 
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #35 on: November 20, 2007, 11:28:37 PM »

ohjb1,

Welcome!  There is no such organization and clearly we are the Peyronies Disease community as far as any organized presence of actual patients is concerned.  If it does not grow out of the PDS then I don't know where it would come from.  Other forums and organizations seem to exist in name only with no participation and no member base.

If you are proposing a 501c3 status, there is one organization that filed for that status but they fit the above description as far as anyone can tell and they have no lobby effort.

Such an effort would have to involve significant organization, member participation, and financial resources.  There are clearly other things such as awareness and education which can be done now to help build a larger base and a real alliance between large numbers of patients and the medical community.  Such a base may have the potential of  launching a realistic lobby campaign.  Our awareness campaign has bogged down because of committed manpower to direct that phase of the PDS.  I have learned since undertaking this effort that many people express an interest but few people have the time and commitment for the long haul.  Until we acquire that base, we are unlikely to see success.

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

Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #36 on: November 21, 2007, 09:37:37 AM »

 ??? I for one would love to see something like this lobby started, but realistically, if every single active member of the board donated $10 to the cause, I don't think we'd get any politician's attention!  I'd think that we'd need to raise major funding, and I don't know where that'd come from (I don't think Auxillium or Augusta would be willing to donate).
Steve
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NickV

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #37 on: April 17, 2008, 04:58:11 PM »

Hi Hawk,
I have suffered from this since childhood and never knew anything about it until I visited my Naturopath in New Zealand; I am married to a wonderful wife who by the way is a Kiwi. I have had a bent penis for as long as i can remember to my left and it was slight but noticeable when fully erect and it made intercourse uncomfortable at the best of times. Lately I had a heart op 3-1/2 months ago with great success ( a bad valve; Aortic replacement cow's valve); I feel fit and yet now frustrated that i had an accident that cause the penis injury to get a fibroid on it and am in pain of it; so the Naturopath suggested Enzymes and I looked up a few Enzyme web sites to order on-line. To my horror the expense was through the roof as if we need more of expenses in this day and age; I was wondering if there is a left over med pool with the guys that had left over Enzyme meds; (maybe not safe?!Or a Co-op support$ to order for the guys without$ with guys with our problem?) I would love to hear your thoughts on that Hawk. I will not use an emoticon for i don't know what to feel just yet.
Sincerely Nick V
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AR

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #38 on: April 17, 2008, 07:47:33 PM »

Great news Hawk. Good work. Congratulations.  AR
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57.  Peyronies Disease diagnosed August, 2007. Mid-shaft hourglassing, 60 degree bend.

sflo

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #39 on: December 18, 2008, 03:56:24 PM »

Listen i would love to start a group or some kind of advocacy thing but as others have said we need to start from square one. I am at the ripe age of 21 going to be 22 and have had peyronies a little over a year. I am entereing medical school and committeed to fighting this thing in my medical career.

I became excited and starting thinking that it really takes a massive effort to do something about this. AKA money and pressure. I would really like to do something especially considering the vast amount of resources I will have between doctors, research studies, etc in medical school.

Can we please start fostering up some ideas to make our voices heard and fight for a cure?

Wishing everyone the best.

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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #40 on: December 20, 2008, 11:48:05 AM »

For those of us who have been around the block a few times, this topic has come up before and not really went anywhere.  The problem is alot of people don't want to show their faces in regards to peyronies, its socially embarrasing to the average joe six pack.  On top of this while its true more and more peyronies sufferers are coming out of the closet, in comparison to other diseases and stuff, we are a small percent, for anyone to wan to invest in a cure.  The fact that auxillium is moving forward is impressive to me, as I have taken over a year break from this forum.  Auxillium is doing more than I would have expected and this is our best hope to be honest.  A small bend in your penis might actually be normal, a lot of pornstars and most guys have somewhat of a bend in their penis, even if its slight. 

Comeback
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Shortie

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #41 on: January 04, 2009, 03:13:41 PM »

1-4-08
Hi All,
    Someone correct me if I am wrong, but the sum total of what we know now (1/2009) about Peyronie's Diseases little more than the world knew twenty-five years ago.  Peyronie's Disease is still a relatively unknown problem with very little scientific research being conducted toward finding a cure. In our group alone we have a membership list of about 1690 motivated victims. More than enough to form a fine statistical base.  If we went one more step with this website, I think we could become the masters of our own fate. I would like to begin collecting data that medical researches could use to direct their research. It could also be used to publicize and create interest in our problem. I am willing to do all the collection, analysis, and dissemination of the data collected for free. I propose that we place on this website a series of questioners to create a data base of information for research use.

Sincerely,
Shorty
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Tim468

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #42 on: January 04, 2009, 04:20:02 PM »

Hi Shorty,

Welcome to the forum - you are correct that this is a unique group that holds some abilities to gather data. I think that there is a problem with the data that we could go further to collect as you are suggesting.

First, we don't know if people are telling the truth. People lie online all the time. Here, a person might lie to promote a "cure" that he is here spamming; he might exaggerate improvements by being blind to reality; he might simply not understand what someone is asking him to report here. The importance of "blinded" data gathering without bias cannot be overstated.

Second, we do not have a good way to isolate issue well. There are many men here who have benefited from the VED, but many were taking supplements at the same time. Did the VED or did the acetyl-L-Carnitine help them? Impossible to say.

What would be wonderful is if the Peyronie's Disease community could work with doctors to form a coalition similar to the Cystic Fibrosis research related group called the "Therapeutic Development Network" (TDN) that pushes research protocols through in the CF community. The TDN has independent funding (but not a ton) and has statisticians and research coordinators for the medical/pharma interface. Good ideas get pushed for drug trials, and a few patients at every large center are enrolled, and thus enough data can be well collected to get meaningful numbers.

I love the idea of this, but I am personally unwilling to take charge of doing it. I simply have too much on my plate, and like many men here, my ego makes it hard for me to face the idea of "outing" myself as a man with a less than perfect penis.

Tim

ps - no need to put the date on your posts - they are automatically there via the BB software.
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

Shortie

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #43 on: January 05, 2009, 01:23:29 PM »

1-5-09

Hi Tim468 (Global Moderator),
     I hear your concerns, but every endeavor worth doing has problems.
        First off, I will do the work! I am a worker. I have started a union from scratch. I have started web networks. I have had legislation passed. I have sheered public interest lawsuits to a happy conclusion. Compared to those this is a “piece of cake”.
Also, I did that stuff while working and maintaining a full life. I’m retired now – plenty of time to devote to my health.
   Second, the questioners I envision would not be compromised by commercial interest. We would not be looking for endorsements. We would merely be looking for ‘base data’
(Age, weight, height, symptom onset, hair color, eye color, symptoms, progressions, relatives with similar problems, sizes,
sex history, related diseases, diet, medications used, etc. In other words anything that may provide coloration.)
        Third, I have opened collaboration with Boston University Medical Urology Department. Dr. Munarriz has offered to be our medical advisor.
   Fourth, I am going to do this project with or without your help. It is so much easer with the membership and contacts this website has, but this is something that needs to be done.
   I’m thinking of a series of questions on a ‘bubble form’ in the Forum section of the website, that can be e-mailed to me.  I will then print out the pages and run them through a test grader to create the raw data. Once the data is digitized it can be massaged for any number of comparisons. If we find any statically significant leads, and follow up if it is needed, I can re-contact to the members through their sign-in-names and ask them to provide more information.
Everything done anonymously, yet still providing valid data tracks.
   Let’s do it. The first step is to formulate about 50 questions in a multiple-choice format. That will limit the number of possible responses to be analyzed, and give us responses as percentages. (i.e. 4 of 5 PDS members have blue eyes, 80% would be worth following up) 


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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #44 on: January 07, 2009, 07:10:17 PM »

Your idea sounds like a good one, but Tim points out some problems.  I welcome your energy and enthusiasum to the forum, we always love new exciting members.  Not to sound hostile but I will say you haven't made very many posts since you joined, I didnt recgonize your screename.  Now not all our members post tons and tons, but you will find one way to gain the trust of most people on this forum is to be real, be yourself, and be here for awhile while being active on the forum. With all due respect, especially in a day of age of scams and fraud, no one really knows you or what your interests are?  Do you get paid to collect data?  Who knows I don't?  We've  done some surveys that included data collection but that was on treatment courses, and they werent perfectly scientific, yet I still believe fairly accurate.  I'm sure in the xiaflex trials that are going on now they are collecting data in the most scientific way possible.  But just gathering data here, I don't know if it will tell us much we arent trying a treatment.  Some have tried ones in the past and tried multiple treatments at once.  No one will stop you from posting your contact info on here and if someone contacts you and gives you their data voluntarilly excellent.  If you have the time work up a questionare, I know right now i'm very busy and dont have the time to set aside for a Peyronies Disease project.  Good luck!  PM me if you have any questions.

ComeBackId
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Tim468

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #45 on: January 08, 2009, 09:05:00 AM »

The central concern I have is the veracity of the data.

We have enough casual surfers who cruise through who might be selling something. For instance, if a guy who sells traction devices comes here and creates 10 ID's and works hard to hide his tracks by shifting ISP, etc., he could easily skew the data to say that traction leads to huge gains in length and straightness. Hawk is very good at catching guys who do that crap (very good), but the fact is that this is not a scientific forum.

That does not mean we cannot try, but we have to be able to see that there are limitations to what we can do here. I would love if we could develop a relational data base that led to robust enough numbers to start to see connections through "data mining". The problem with rare diseases (and Peyronies Disease may not be that rare) is that no one doctor can collect enough data to be robust, and the urologic community has not decided to connect with each other to do this (as has the CF community as discussed below).

Other than having a sense that this is more common in Caucasians, and more common after the fifth decade of life, we don't know that much. New connections to diabetes, aging, obesity and the metabolic syndrome are all bing made. But I would love to see what a large data base showed about, say, hormonal levels like testosterone and Peyronies Disease.

I just don't think we are equipped to get such data.

Tim
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #46 on: January 08, 2009, 03:41:21 PM »

As PDS administrator (and its predecessor forum) for 5 years and as a computer professional, I agree with Tim.    I have labored over surveys and fine tuned them only to realize they were flawed soon after I published them on our website.  A survey design in itself requires a great deal of work and much more understanding of how to frame a series of questions and answers than most would ever guess.

Next is Tim's point of verifying.  I suppose a participant on any survey (I am on one for a leading Cancer Center) can lie.  I am however verified to have had surgery for prostate cancer and to only be one person.  That cannot be verified by an internet survey.  Even if everyone is honest and forthright, you cannot have confidence in that fact so you can have little confidence in the data.  I have been repeatedly shocked by the lack of participation on our surveys by our own members that belong to our PDS community.  Some surveys would only get a dozen or so participants.  Throw in a couple fraudulent responders and the data is very skewed.  Lets face it.  We have had members posting here that we have caught red-handed as frauds.  We have had other that we suspect were just bored and playing with the forum.

I think we can get a "feel" for several issues through PDS surveys but we cannot get verifiable data used for scientific purposes. 

We are in the best position of any presence to connect doctors and patients however.  For instance, if a doctor was participating in a study and needed to contact Peyronies Disease patients.  Another example might be if a person conducting a survey wanted to have patients (members) they could verify contact them directly.  Also, a urologist that was a part of the PDS could possibly get a better "feel" from direct feed back on some issues.

Heaven knows that I am always looking for ways to advance our contribution to the Peyronies Disease community and if I am missing something, I am all ears.
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Shortie

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #47 on: January 09, 2009, 11:03:04 AM »

Friday 1-9-09  11AM

Hi Hawk, Tim468, and ComeBackKid,
 Thanks for the feed back. I appreciate your caution. As to my style of participation, I work on something for a while when it hits a slow point or something else takes a priority I switch to that but I always return and follow things to a conclusion. I have the fortitude and patience to keep plugging away at something for years. The research that I propose is something that will 'drip in' over a long period. So my style is well suited to it.

I'm also more efficent as a worker than a leader. As my ex-boss often said I was the perfect #2.  I found as a running back I did well but as a blocker I was on two undefeated teams, one in high school and one in college. In twelve years of football, I was never on a team that lost more than two games in a season. That was a life lesson for me. I'm also from a long military tradition, that understands "Lead, Follow or Get out of the way." I can lead, I can follow, and I can get out of the way to let others do their thing.

As to who I am and my sincerity, maybe the best way to fast track that is to meet one of you guys personally and walk around my home town Cambridge. Maybe meet some of my neighbors. I think that may assure you that I am not a flash in the pan. You are probably sensing that I am different (ie. crazy?)  ....  and I'm proud of it. Being an activest and having passion is not all bad.
Where would the world be without the nuts like me (Us?). We may create a lot of 'heat' but things get done.
How about one of you guys volunteering to meet me. You probably will not be bored.
Regards,
Shortie



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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #48 on: January 09, 2009, 01:07:20 PM »

Shortie,

As I indicated in my private message to you background, rapport with members, ability, time, commitment, are all essential but so are the specifics of a plan.

Rather than saying I want to help, lets kick around ideas that we can accomplish, you seem to be saying, "I know what is needed and just how to proceed".  The problem at this point is that you have been very general and not at all specific.  You also have yet to address any or the specific problems Tim or I have addressed concerning our best assessment of what you propose.

I personally think some of this is better hashed out in private message rather than on open forum but that is for your benefit and your future ability to get something accomplished.  Because of that, it is your call.  I do not mind the open forum.
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Tim468

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #49 on: January 10, 2009, 11:49:15 AM »

Would love to meet but do not plan a trip to MA soon. I agree with Hawk's comments - it is time to talk about what data we might get, how robust it could be, and how we can assure that.

Tim
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