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Posted 8/2/2008 8:29 PM (GMT 0)
As many of you know I stepped back as a moderator here to devote more time in advocacy to get more attention to fight prostate cancer.  I started this thread to let you know how you can help.  As members here you are already helping others, but here is some more you can do:

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USTOO

www.ustoo.org is an international support group and advocacy for prostate cancer.  They host meetings in 320+ locations across the US and the rest of the world.  There is likely a chapter near you.  Mine here in Las Vegas meets at my cancer center ~ The Nevada Cancer Institute ~ on the third Thursday of every month.  Many times we have guest speakers, talk about research, share stories just like here, and even make new friends.  They also provide a means for you to join advocacy as well.  And if you are reading this, you probably should, too.  For more information you can click here.  You can also find a local chapter by clicking Here.

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ZERO - The project to end prostate cancer.

This is the strongest group focused on the policical aspect of prostate cancer.  By that I mean they are located in Washington DC, contain information on how to communicate to your representitives in Washington and your state, and tracks current bills and legislation involving prostate cancer.  The CEO is Skip Lockwood, and on the board of directors, among many, is Michael Milken ~ a long time stage IV survivor, and my friend Mike Scott.  I have spoken to all three men and they are doing a great job.  This used to be called National Prostate Cancer Coalition. 

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The Prostate Cancer Foundation

Also an advocacy group, The Prostate Cancer Foundation is the leading fundraiser in the US for prostate cancer.  The President and CEO is also the founder ~ Michael Milken.  This site is loaded with great information and support as well.  You can go to the the Prostate Cancer Foundation by clicking here.

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The "New" Prostate Cancer InfoLink

Also an advocacy group, The "New" Prostate Cancer InfoLink is also a news service and social network.  You can visit this site by clicking here. You will find many of the names I've listed below there as well.  TNPCIL is run by Dr. Arnon Krongrad and Mike Scott, Mike is an original founder of the National Prostate Cancer Coalition above.

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  YANA ~ You are not alone!

Mostly an information sharing website You will find many prostate canecr survivors and their stories.  My good friend webmaster Terry Herbert presides over the daily needs of the site.  He is a great Advocate and survivor.  www.yananow.net

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Some Names in the Prostate Cancer Advocacy Arena

Terry Herbert ~ Web Master at Yana...www.yananow.net

Kathy Meade ~ Founder of VPCC - Virginia Prostate Cancer Coalition, Blogger

Mike Scott ~ On of the original founders of the National Prostate Cancer Coalition.  Web Master at The "New" Prostate Cancer Infolink (And he has drafted me for a project too)

Ralph Valle ~ Chapter Director of US Too in Phoenix; Winner of the Harry Pinchot Award for his advocacy contribution in the fight against prostate cancer.

Chuck Maack ~ Chapter Director of US Too in Kansas; www.ustoowichita.org ; Email: [email protected] (PCADVOCATE here at HealingWell)

Dr. Arnon Krongrad ~ Web Master of The "New" Prostate Cancer Infolink, LRP Surgeon. 

Joel Nowak ~ Survivor, Blogger, Petitioner (Has survived multiple cancers)

David Emerson ~ Survivor, Founder of www.FLHW.org, blogger (FLHW here at HealingWell)

Leah Cohen ~ Author and Web Master at http://prostatecancerblog.net (Living with prostate cancer | Wives get PC, too)

Skip Lockwood ~ President of ZERO - The Project to End Prostate Cancer!

 

 

I am a member of each of these organizations and can help anyone join who would like to join.  I will continue to grow this thread.  Feel free to post a suggestion and I will manage the lead post and add your suggestion.  The names listed are just some of the names that are deeply involved in prostate cancer advocacy.  These ones are ones that I met through the internet.  I will add any if you send them to me.  If anyone would like to contact them, I have an open line to them. 

 

Thank you for all your help.  Together we are stronger than alone!

 

Note: These sites are not for profit sites.  They do accept donations but I am not asking anyone to do so.  These sites are dedicated to the fight against cancer. And therefore are valuable information for our members.

 

Tony

Post Edited (TC-LasVegas) : 2/2/2009 10:27:59 PM (GMT-7)

Posted 8/2/2008 9:29 PM (GMT 0)
Tony thanks for all you do for us. We need advocates like you researching all the possibilities. You are awesome my friend.

peace and love
Dale
Posted 8/3/2008 1:28 AM (GMT 0)
I agree! You are awesome. I signed the petition and sent to a bunch of people and requested they send it along to all they know.
I hope it will help.

Cindy
Posted 8/3/2008 1:55 PM (GMT 0)
Thanks Tony! We are all signed up and appreciate the info!
Posted 8/3/2008 2:29 PM (GMT 0)
My question is more for the moderators than Tony.

When I joined this group in 2007 I posted a link to a non-profit that I like to support and the post was removed
because it violated the rules of the group.

Have things changed?

I am not trying to kick a hornets nest nor am I trying to inject a lot of solicitations and/or marketing here in; I am really looking for an answer.

BTW - Tony great information and groups.....the cookbooks available at PCF are the BEST!
Posted 8/3/2008 4:40 PM (GMT 0)
I've asked Peter to look at this thread and maybe answer the question/questions.  I have no history of this subject, so feel he can read the thread itsl\elf and understand it better than my trying to explain it. 

Posted 8/3/2008 10:23 PM (GMT 0)
When I originally joined my signature file included a link to a non-profit
that I run, www.flhw.org - at that time I was asked to removed it. The
site does more than raise $......
Posted 8/4/2008 1:53 AM (GMT 0)
Tony,
I'm sorry but I am fairly strict about this, partly because it just isn't possible to screen all organizations and I really want to keep the forum devoted to support. I have setup a Resource Directory that lists organizations and they can submit their listings to the directory for our members but the rules are intended to keep the forums free of advertising or fundraising efforts.  The rules also prohibit using the forums for political advocacy efforts (ie. such as raising awareness for some government proposals or actions).

Peter
Posted 8/4/2008 5:42 AM (GMT 0)
Peter,
Thank you and I fully respect your position. And thank you for letting the other sites above stand and for not fully editing my thread. Tough road lies ahead for my volunteer work, but rules are rules and I know all too well how difficult it is to uphold them. I know I made many friends here, but I made a few unhappy people by upholding the rules when I was a moderator. But this site is so valuable to so many, myself included, that these rules must be upheld and followed.

David,
I have posted your website on my personal blog since I started it. And if you will send me the events calandar I will make notes of them in my blog. I don't always have time to visit the site but I read your every post. You are a wonderful man who's faith, love, and hope has touched so many. I would have been doing the wrong thing by letting it stand here so I am glad I never had to make that call.

The resource directory for the Prostate Cancer forum at HealingWell can be read by clicking here.

Tony

Posted 8/4/2008 11:55 PM (GMT 0)
I have asked a bunch of people to sign the petition but we haven't received a confirmation email like it states. It says you receive this to confirm who you are. Is anyone else having this problem?

Posted 8/5/2008 1:21 AM (GMT 0)
Hi Cindy,
Peter has requested that we not circulate the petition on the site. My Email is activated and you can send your requests to me and I will help you. However, you can easily search the terms petition and prostate to find it. I appreciate your support but I have to honor Peter's request.

Tony
Posted 8/6/2008 3:58 PM (GMT 0)
There is a direct link to the petition on my website.

Richard

Posted 8/25/2008 10:28 PM (GMT 0)
Bump

Added TNPCIL.
Added Names in the Prostate Cancer arena...

Post Edited (TC-LasVegas) : 1/19/2009 9:49:15 PM (GMT-7)

Posted 9/29/2008 3:49 AM (GMT 0)

Tony

I don't know where to add this, but the University of Arizona clinical telephone study we are a part of should be highly recommended for those with advanced Prostate cancer.

Posted 10/12/2008 11:43 PM (GMT 0)
Dear Tony.

Thank you for all you do

Mika
Posted 10/12/2008 11:43 PM (GMT 0)
Dear Tony.

Thank you for all you do

Mika
Posted 10/13/2008 7:05 PM (GMT 0)
Thank you Mika,

I am bumping this again. I have joined hands with Ralph, Valle and Chuck Maack for Zero - The project to end prostate cancer. We have been invited to be patient spokesmen for this group, perhaps the largest advocacy group in the US for prostate cancer. It's an honor to be working with them, and together we will be working to bring awareness to the main stream.

I pointed Chuck here and he asked that his contact information be added to the post. So it is with his concent to include that next to his name above. Chuck and Ralph have been writing for years and have been angels on our side. Congratulations to Ralph for winning the first Harry Pinchot award for his work in advocacy awarded by UsToo International. It is in these guys foot steps I will learn from. If I can accomplish a fraction of what they have, it will be a lot.

If you search their names in Google you'll get my point.

Tony

Post Edited (TC-LasVegas) : 1/19/2009 9:49:29 PM (GMT-7)

Posted 11/17/2008 6:22 PM (GMT 0)
Bump

Wristbands, ribbons, etc are available at these sites...

Tony
Posted 11/17/2008 7:49 PM (GMT 0)
TC, all

Just an update of FLHW.org

On September 26th we held our forth annual golf tournament and raised approximately $28,000, this brought our 2008 total to $32,000. The entire $32,000 will be donated to the Prostate Cancer Foundation for advanced prostate cancer research.

In just over 3.5 years we have now raised and donated $100,000 to PCF!

We have larger goals and more events planned for 2009, stay tuned!!
Posted 12/7/2008 4:24 AM (GMT 0)
One more bump!
Posted 12/29/2008 2:08 AM (GMT 0)

I would also like to thank Ed Randall and his foundation Ed Randalls "Bat for the Cure".

He allowed me to help him raise awareness that I believe will hit over a hundred thousand people.  That target was Baseballs winter meetings here in Vegas.  I got to meet some baseball stars, share my story, and I also made one very great friend.  God bless you Ed!

Other organizations helping were US Too, Zero ~ The project to end Prostate Cancer, and Prostate Cancer International.  I admit I was running quadruple duty for all 4 groups. 

Tony


Posted 1/9/2009 7:09 AM (GMT 0)
I have volunteered to work with Ed Randall again...With ZERO in some cases...We are calling all the major and minor league ballparks in baseball to set dates for prostate cancer awareness. Any one want to help?
Posted 1/20/2009 4:50 AM (GMT 0)
Bump
Posted 2/3/2009 5:28 AM (GMT 0)
bump
Posted 2/19/2009 5:04 AM (GMT 0)
Bump
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