Local couple creates support system for bladder cancer patients, survivors


DALTON -- Cynthia Kinsella felt so alone as she watched the television screen.

In 2004, Kinsella was diagnosed with bladder cancer. She was undergoing a weeklong chemotherapy and radiation treatment for bladder cancer as she watched someone with breast cancer being interviewed on television.

"I just sat down and cried because there was no support [for bladder cancer] ... and there was so much for some other cancers," Kinsella said.

In 2007, Kinsella cofounded the American Bladder Cancer Society with her husband, Edward. It is located in Dalton.

Cynthia Kinsella, 56, has been cancer-free since 2006 after undergoing a radical cystectomy, and she aspires for the nation to know more about bladder cancer -- beyond that it's common to older male adults. There are nearly 74,000 people diagnosed with bladder cancer with three-quarters of those being males who are most likely to be over 70, according to the National Cancer Institute.

The Kinsellas' fledgling nonprofit aims to support bladder cancer survivors, provide impartial information, and advocate the federal government for more equitable funding to research bladder cancer.

Kinsella surely didn't fit the stereotype. She wishes she had a similar organization to help her through her own diagnosis.

Kinsella learned about bladder cancer after suffering from symptoms that include blood in her urine and pain around her bladder region. Other symptoms include pain while urinating and back and pelvic pain.

Through the ordeal, Kinsella said she found information online, but it was in "cold" terms. Following her diagnosis, she needed support as much as information. There was also the fear a cystectomy could lead to the removal of nearby organs.

"I didn't find support or someone to reach out to," Kinsella said. "I didn't even know what the term meant."

The American Bladder Cancer Society hopes to provide that support.

In January, the nonproft reached an early milestone by hiring its first full-time employee, Executive Director Cynthia Cardeli. it also has an active Facebook page and hosts chat forums everyone Sunday night through its website.

The website also provides impartial information. There have been 50,000 posts added to the site since it was put online in 2008, according to Kinsella.

The organization is run by a seven-person board comprised mainly of people who know someone who had the disease or who were themselves diagnosed with bladder cancer. Kinsella, a Realtor, and her husband Edward, an engineer, are both recent retirees and currently serve as unpaid full-time staff.

They have national ambitions for the nonprofit. They say their immediate priority is to raise funds so they can hire more staff, including social workers, to cater to the needs of those with bladder cancer.

Edward has been in charge of registering the nonprofit in all 50 states so it can collect charitable funds. Community fundraisers are also coming, Kinsella said.

In five years, Kinsella said she hopes to have "enough staff and money to provide support services for everyone that needs it. We'll have instructional videos on the types of bladder cancers and procedures."

The Kinsellas should be preparing for retirement, but instead they are hunkering down for the long haul, pulling out a loan to hire the nonprofit's first employee.

"I don't think either of us have any hesitancy going forward," Edward said.

To reach John Sakata:
or (413) 496-6240.
On Twitter: @jsakata


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