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October 22, 2013

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October 22, 2013

This organization was founded in 2008 to provide help, hope, and support to members of the bladder cancer community. Each year, more and more people access our website/social networking site to receive information and support for this often overlooked and underserved disease.

Ways to make it better...

If I had to make changes to this organization, I would...

Expand our outreach to individuals affected by this disease beyond the support and information available on our website/social networking site.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

June 29, 2010

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June 29, 2010

About 5 years ago my best friend was diagnosed with Bladder Cancer. I was unfamiliar with Bladder Cancer and when I went to search for information there was little available. The research she did was often too little and very frightening. There was no one to talk to except her doctor who was of little help when she asked for more information and options for treatment or heaven help her even asking for a second opinion for treatment options. She selecting another doctor for treatment and as she went through the treatments she started looking for a way to help other newly diagnosed Bladder Cancer patients as well as survivors and their caregivers. She did not want other people to have to go through Bladder Cancer alone. I have watched this organization grow and see all the help and support it gives to people at a very difficult time in their lives. It is available 24 hours a day and I see users on the site at all hours, sometimes searching for information and sometimes asking questions and yes, getting answers at all hours. The site can help a person find current information on Bladder Cancer and treatments available, find a doctor in their area, help with insurance coverage problems and help with personal questions about life during and after treatment. The site will not tell a person what treatment is best for them as only their doctor can know treatment is best for their particular diagnosis. No one knows better what a Bladder Cancer patient is going through than another Bladder Cancer survivor. Every cancer is unique and comes with its own treatment effects, after treatment effects, as well as long term life issues and fears. THIS ORGANIZATION IS TRULY A LIFE LINE FOR SO MANY BLADDER CANCER SURVIVORS.

The Great!

I've personally experienced the results of this organization in...

I ahve experienced the results of this organization since its beginning and every day since.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Hearing from people about how this organization has helped them or a loved one.

The kinds of staff and volunteers that I met were...

The board members are very committed to this organization. Many are bladder cancer survivors and are scattered through the United States and give up personal time to volunteer.

If this organization had 10 million bucks, it could...

Help educate people about the symptons of bladder cancer so it can be detected early making the survival rate soar.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 21, 2010

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June 21, 2010

Any cancer is a scary thing. Bladder cancer is particularly scary because of its location and the lack of information available. The American Bladder Cancer Society was created to provide support for those in need of information to ease their worry and to give them the tools to take an active part in their treatment. Knowledge is power. This ABLCS gives the opportunity for knowledge and mutual emotional support through its web site. The Officers and Board get no financial gain from their participation and infact financially support the orgainzation. This is a site that truly is their for those who use it and is worthy of support.

The Great!

I've personally experienced the results of this organization in...

The assistance of others

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The dedication of its leadership

The kinds of staff and volunteers that I met were...

Board Members

If this organization had 10 million bucks, it could...

Fund greater visability and thus greateravailabilty of information and emotional support for bladder cancer victims.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

I am a 15 yr. survivor of bladder cancer. I was treated for UTI's for a year before being referred to a urologist. By that time it was invasive, and a radical cystectomy was performed. There was little information available online or elsewhere. The creation of the American Bladder Cancer Society has been a godsend for many patients and caregivers, because now there is a place where they can fin information, interact and get support from fellow survivors. This nonprofit organization has come about because of the efforts of survivors without the support of any celebreties, outside financial support or other support. Even when the medical care is excellent, there are still emotional issues that bladder cancer patients experience that are not addressed. There are no local bladder cancer support groups. There are no marathons or large fundraising events to support this type of cancer. However there is a place for patients, caregivers and family, the website: www.bladdercancersupport.org, bladder cancer patients can share stories and information, gather information and keep up on research. Female bladder cancer patients are just like those who have had breast cancer; self-concept is attacked. The patient grieves for her loss and searches for identity as a female. . Too many people aren’t aware of how much of a women’s issue bladder cancer can be. Unlike those with bladder cancer, the awareness about this cancer is very limited even though it is ranked as the 5th. most prevalent for men and women, and as prevalent as cervical cancer in women. The efforts of the ABLS and the website is vital to providing information, support, and helping to stamp out this cancer. It is a worthy endeavor and deserves more support than it gets.

The Great!

I've personally experienced the results of this organization in...

I have been and still involved in trying to keep this organization going for those who are survivors, who will be survivors of bladder cancer. I serve on the board, I actively promote bladder cancer awareness and the organization in my own community.

Ways to make it better...

If I had to make changes to this organization, I would...

If I had the money, I would see that more people knew about the organization. That more support was forthcoming. I would see that more people were aware of the symptoms of bladder cancer.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Knowing that it was a place where others could find information, support and interact with other survivors.

The kinds of staff and volunteers that I met were...

The staff and volunteers are mostly survivors who wish to make a difference.

If this organization had 10 million bucks, it could...

make a difference in bringing about awareness of this disease so that lives could be saved instead of the patient being diagnosed too late.

Ways to make it better...

The strides this group has made without outside monetary support, media support or celebretity support has been amazing. Had the group had the aforementioned they could make great stides in removing this from the forgotten cancer list.

In my opinion, the biggest challenges facing this organization are...

Trying to get support both monetary and media.

One thing I'd also say is that...

The goals and aspirations of this organization is one that is more worthy of support than it is getting. Support is sorely needed for a cancer that is deadly if not diagnosed early enough, and is far too forgotten by many.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

I am a 10 year survivor of stage IV bladder cancer. I believe that those who survive have a duty and responsibility to those who come after. I have joined with the others on the Board to increase the information about this cancer and its special risks for women, making such knowledge about bladder cancer clearly available to others, and also advocating for research funding. I also believe that another of our roles on the Board and the website is to provide hope to those newly diagnosed-- to show that with prompt, appropriate and informed treatment, this aggressive cancer is survivable.

The Great!

I've personally experienced the results of this organization in...

I have observed the positive responses from users of the Bladder Cancer Support website.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

positive helpful attitude about working with others with this cancer

The kinds of staff and volunteers that I met were...

serious about their goal of bladder cancer advocacy

If this organization had 10 million bucks, it could...

Really get the word out about the risks of bladder cancer, preventive steps, and fund research.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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