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ADVOCACY..IT ONLY TAKES ONE

9 years 5 months ago - 9 years 5 months ago #31481 by Cynthia
Pat,

I did not think you were being critical you know how hard we are working.

What most people would find hard to believe is how competitive other groups are when it comes to their organizations and I can understand that, in this economy every penny counts. Another organization is not going to raise funds for a different cancer even an organization for the same cancer would not do that.

Case in point as far as misinformation and cancer fundraising. About a month ago we started getting requests for bladder cancer merchandise from people doing Relay for Life to put in gift bags. These people think that if they do fundraising for the American Cancer Society that some of the money goes to other organizations such as ours. This is not a fact at all not that what they do is not important. We have had to take a step back and ask ourselves if we could afford to do this and if it is the best use of our resources. We are trying to do what we can because it does raise awareness in survivors of this communities presence. But if we get too many requests we are going to have to say no because it could bankrupt us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 years 5 months ago #31479 by Patricia
Cynthia...my thinking was more along the lines that we need their help not the other way around. We could get a lot of golf fund raisers with that group.
I'm just brainstorming...not critical by any means.
Pat

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9 years 5 months ago - 9 years 5 months ago #31476 by Cynthia
The last few days there has been a lot written about bladder cancer advocacy on our forum. This site is done for survivors and the people that care about them by the American Bladder Cancer Society. Providing support through an online community is only a part of our mission. If you have not had a chance read our mission statement.

Our Mission Statement

bladdercancersupport.org/index.php?option=com_content&view=article&id=1&Itemid=87

The American Bladder Cancer was started by a group of survivors and caregivers out of the same frustrations you have voiced. We are still frustrated our resources only allow us to do so much and our first priority was this website. The building and maintainace of this site represents tens of thousands of dollars and is an ongoing endeavor. We are now to the place we can look at the next part of our goals. We are seeking grant money and donation to support advocacy and awareness work. We firmly believe as you do that knowledge of bladder cancer can save lives. If you look at our logo you will see a small flower and the words Forget Us Not for we believe that bladder cancer is the forgotten cancer. Bladder cancer is a very misunderstood cancer by even the majority of the medical community. The only real money going into research for bladder cancer is by medical/pharmaceutical companies. Bladder cancer is the most expensive cancer to treat and as sad as that is it is the only reason there is as much research as there is. It is still one cancer no one wants to talk about and we do not have a famous voice to add to ours. The need for awareness of bladder cancer is critical every day there is more people that are diagnosed at an advanced stage that could have been spared that if they had even basic knowledge of bladder cancer and its symptoms.

As Pat pointed out there is power in numbers and the Komen foundation is indeed a case in point where one voice can grow too many and become heard. The dream of the American Bladder Cancer Society is to become that voice for bladder cancer. We hear your frustration and invite you to join us in your own way to reach our goals. If grant writing is your thing let me know if fundraising is your thing let me know. If you have an idea and need help achieving it let me know. No one wants to hear this but to achieve our goals we need money. If you work for a company who gives to non profits such as our let me know. If someone asks you what they can do to help tell them to do a fundraiser it does not matter if it is a small one or a big one, enough golf tournaments, runs and yard sales will save lives.

We can talk about what should be done forever but it will not get the job done. The American Bladder Cancer Society a 501(c)(3) nonprofit organization has worked had to get the framework in place to go forward and give bladder cancers voice a home. We would like to ask you to move past your frustration and add your voice to ours until there are so many that we have to be heard. My contact information follows or just click the contact us link in the main menu.

Thanks for listening to my rant.

PS Pat the color for bladder cancer is orange but we we looking at ribbons and bracelets the other day and thought two colors might be nice. How about ABLCS Blue and Orange?
As for prostate cancer they are very well funded and have many organizations working for them the do not need our help.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 years 5 months ago #31475 by Patricia
** This thread discusses the content article: ADVOCACY..IT ONLY TAKES ONE **

Granted this is about breast cancer but it helps define the beginnings.

Over in Dallas, Nancy BrinkerAmbassador Nancy Goodman Brinker (born December 6, 1946, in Peoria, Illinois) is the founder of Susan G. Komen for the Cure, an organization named after her only sister, Susan, who died from breast cancer in 1980 at age 36. ..... Click the link for more information. created the Susan G. Komen Breast Cancer Foundation in 1982 in memory of her sister, who died of the disease at age 36. Brinker brainstormed with some friends, collected a couple hundred dollars and organized the foundation's first event, a polo match. The following year, the group held the first Komen Race for the Cure, which drew 800 participants in Dallas. The fund-raiser remained a regional affair until 1990, when Marilyn Quayle got involved.

Now granted a pretty big name got involved but it started with an idea and a couple of hundred dollars.

If we joined up with Prostate Cancer as a partner for a cure for both Prostate and Bladder we'd have a much larger following...just hope they aren't too old to run!! Some event...Think with me people and somebody decide on the real color of our ribbon.

Make any sense? Pat





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