cancer

For Breast Cancer Awareness Month, the uniform T-shirt of Batavia City Fire Department is adorned with pink ribbons on the front and back so that firefighters can show their support of those who have fought or are fighting the disease.

"We want people to understand that we appreciate the fact that firefighters are often given the term heroes, however people fighting breast cancer are really the true heroes," said Chief Stefano Napolitano. "We want to support those people that have lost the battle and those that are currently fighting and those who are going to be fighting in the future."

Napolitano's own mother was successfully treated for breast cancer (though she has since passed due to other health reasons) so this is a cause that is especially important to him, he said.

"I know several other ladies that are fighting or have fought and are survivors so this is just a small way that city fire can let them know that we're here supporting them," the chief said. "We enjoy the support of the community and it's an honor and it's humbling to be able to provide that support and return to those that are fighting their own fires."

This is the second in our series of profiles of the 2014 Chamber of Commerce Award winners. The awards will be presented at a dinner at the Clarion Hotel on Saturday.

One of Genesee County's most active volunteer organizations is in for a pretty big year. Genesee Cancer Assistance is celebrating its 20th anniversary, and it's being honored with a Special Service Recognition Award from the Chamber of Commerce.

Consisting of two office staff and around 50 volunteers, Genesee Cancer Assistance was founded in 1995 after the American Cancer Society withdrew its services from Genesee County. The organization provides emotional, financial and practical support to Genesee County cancer patients and their families. According to office manager Patricia Arnold, they have helped about 1,700 families and given more than half a million dollars to cancer patients in the last 20 years.

Some of their most well-known annual fund-raising events include the Festival of Hope, 5K Walk, golf tournament and spaghetti dinner.

Their nomination came from Paul Figlow, a member of the Genesee Cancer Assistance board of directors and chairman of the Festival of Hope.

"The reason I nominated (Genesee Cancer Assistance) is that I really think we need to get the word out about what we do," Figlow said.

Three things that make Genesee Cancer Assistance special

If you talk to the people involved, they will tell you that there are at least three major factors that distinguish Genesee Cancer Assistance.

First, all of the money they raise stays in Genesee County and goes directly to those who need it.

Second, everyone involved with the charity has been personally touched by cancer in some way.  Figlow, for example, lost his mother to cancer in 2010.

"Probably about 99 percent of the people involved can give you a story," Figlow said. "Our organization really hits home to a lot of people."

Finally, the people of Genesee Cancer Assistance give their time and effort neither out of necessity nor personal gain, but because they have a passion for it.

“We're blessed with a very strong board presence,” said Steve Grice, board member and golf tournament co-chair, “people who are willing to put the effort in. But we're also blessed with a group of volunteers who don't go out and wave a flag, but are right there when we have an event.  They show up and ask, ‘What can we do? Where do you want me?’ Anything you ask them to do, they'll do.”

Volunteers will also help with technology, advertising, or other areas according to their interest and expertise.

“It’s like God brought them down here,” said Board Member Joe Gerace, who is chairman of the spaghetti dinner fundraiser. “They really are good people. And they don’t complain (about the work). This is really a big family.”

As for Arnold and Sue Underwood, the only two paid staff, Grice said that they go “above and beyond” for their positions.

How Genesee Cancer Assistance works

Each patient is given $400 upon application. This is to help with hospital visits, copays, mileage, hospital parking fees, etc.

"It may seem like a small gesture to some," Grice said. "The money sometimes might seem minimal; but it's really not minimal to someone who's lying in a hospital bed on chemo and just wants somebody to hold their hand, or just sit there and watch TV with them. The family might not have the funds, because of insurance and all that."

Patient advocacy is also a big part of the mission. Staff at Genesee Cancer Assistance will answer, to the best of their ability, questions about any issues or concerns patients bring to them.

"Say a patient calls and says their utilities were shut off," Arnold said. "We will step in and tell them how to go about contacting the utility companies and what has to be done for their heat, for example, not to be shut off."

She said that oftentimes, if a patient can present proof from a doctor stating that the loss of electricity or other utilities would cause him or her harm, then the company cannot shut them off. But there are specific procedures people must go through in cases like these, and Genesee Cancer Assistance can guide them through such procedures.

Other services include referrals to other agencies when necessary (for example, when people have used up the services Genesee Cancer Assistance is able to provide), sharing educational materials with the community, and free Biblical counseling through Grace Baptist Church in Batavia.

"Simply Beautiful"

One of Genesee Cancer Assistance's best-kept secrets is the "Simply Beautiful" program, which is Gerace's brainchild. He runs it with the help of dedicated volunteers Carol Grasso, Joyce Meisner, Karen Roland and Amy Nichols, as well as others.

It is sort of a cross between cosmetic aid and a support group. The first thing Gerace does for everyone once they arrive is try to make them comfortable.

"When they come in, they're very nervous," Gerace said. “And I try to help them out. I give them coffee, or donuts, or fruit. It depends. (Once they feel relaxed), if they don't have a wig, I put a wig on them to show them what they look like."

Patients -- both men and women -- get free makeup and wigs (or hats, if they are not interested in wigs) up to $200 in value, over and above the $400 they receive upon application. Makeup includes artificial eyebrows and eyelashes for those who have lost these as a result of chemotherapy.

"Simply Beautiful" meets on a monthly basis as a general rule, although sometimes this is impossible due to treatment schedules or illness. In those cases, Gerace will do his best to accommodate people's needs.

"They'll either call me up, or call Patty from the office, who says: 'Joe, we got a woman who needs a hairpiece and can't wait. Would you let her come to the office and see if it's what she wants?' I've done that many times."

Gerace started "Simply Beautiful" after being involved with a similar program in association with the American Cancer Society, "Look Good, Feel Better."

When American Cancer Society services diminished in Genesee County, he and his fellow volunteers "had to start from fresh." He was asked to come up with the name for a new program, and was told to "keep it simple."

"And I said, 'Yes, that's a good name -- "Simply Beautiful.” ’ ”

A community effort

Another ingredient in the success of Genesee Cancer Assistance is their ability to form productive partnerships with people in the community.

"There are many people that we have helped who take it on themselves to do their own fundraisers,” Figlow said. “And they basically do it all themselves. These are quite the events -- I'm sure they spend months working on them. (In each case) they tell us about the event, they take care of everything, and then we receive a check every year."

Some of their partners include Paul Berardini of Big Pauly's Pizza, T.F. Brown's, Kiwanis of Corfu-Pembroke, Toni Funke and her "Zumba in the Sand" program, and Michelle Shade, who puts on a "Christmas Angel Festival and Basket Raffle" at Calvary Baptist Church in Batavia every November.

"All the service clubs in Genesee County help us some way somehow," Gerace said, "whether it's the Lions Club, Zonta, Sertoma Club (and others). And Patty Arnold is very good about making sure everyone who helps us gets a thank-you."

For more information on Genesee Cancer Assistance and what they do, call 345-0417.

Photo: Dr. Kevin Mudd, president of Genesee Cancer Assistance Board of Directors.

Every year in Genesee County, 350 people are diagnosed with cancer and 100 people die from cancer, which is why, according to a group of the American Cancer Society who were in Batavia today, cancer should be an important election issue.

Americans need research and treatment for the disease and the assurance of funding for both, according to Hillary Clarke, director of federal government relations, so this is an issue voters should take up with candidates for office.

At www.cancervotes.org is a voter's guide for the presidential election with responses from the two major party candidates, but Clarke said neither of the candidates for the NY-27 Congressional District responded to the Cancer Action Network's survey.

Contacted today, a spokesman for Kathy Hochul's campaign said Hochul did respond and her answers are posted on the Web site. We've not been able to find those answers and requested a direct link to the appropriate page.

The spokesman for Chris Collins, Micheal Kracker, sent the following statement in response to a simple question of what would Collins do to support the fight against cancer.

"As the brother of a cancer survivor, Chris Collins knows how important it is to support cancer research. Chris also recognizes how important it is to make sure no government bureaucracy stops doctors from giving patients like Chris' sister the treatment they need to stay healthy. We need to be sure that doctors, not government bureaucrats determine how best to care for patients. We must also promise to protect Medicare for our seniors so they continue to receive the access to affordable care they paid for their entire lives."

We'll update this post if any additional information comes in.

UPDATE: Statement from Angela Pause-Smith, communications director, American Cancer Society Cancer Action Network, Inc.: "Neither candidate responded to our questionnaire so there actually isn't a Voter Guide for this race. I'm sorry if someone told you that there was one."

UPDATE II: As soon as I posted the update above, Pause-Smith emailed the following: "So I learned literally a moment ago that late this afternoon Hochul returned our questionnaire. There is a process we need to follow to post it on our Web site and we've asked for that process to be expedited so you can see the responses, but I can't provide a time that they will be available."

UPDATE III: Pause-Smith clarifies: "It may not have been late this afternoon that she returned it, I just learned of it late this afternoon. We received it sometime today."

UPDATE IV: Hochul's answers are now available, click here.

Photo: Julie Kumiega, Hillary Clarke and Karen Hall.

"You never really think that cancer could reach your child," Jamie Wasieleski said.

For her, it's become more than just a thought. It's become a reality. Her son, 18-year-old Austin Heinemen, was recently diagnosed with it.

A 2012 graduate of Pembroke, he has always been a healthy kid, into sports, dirt-biking and active all year round, and was unexpectedly diagnosed with a desmoplastic small round cell tumor also known as DSRCT.

It's a rare form of childhood cancer that predominantly strikes boys and young adults. DSRCT is a soft-tissue sarcoma that is aggressive and primarily develops in the abdomen.

Treatment for DSRCT is extensive.

"He has been through six intensive chemotherapy sessions that last four days every three weeks," Wasieleski told us. "The chemo kills everything, good and bad, so between chemo sessions he's at Roswell with anything from a cut on the finger, which leads to a pretty nasty infection, to pneumonia."

On the bright side, the chemo has made a difference and as a result of the PET and CAT scans, the tumors are shrinking.

Currently, Austin is waiting for his mother's health insurance to approve him to undergo surgery in New York City. He will have the tumors removed, and then will go through a 28 day stem cell trial. Following that, he will head to Washington, D.C., for another bone marrow trial.

"His father, myself and his three sisters have tested to see if we are a match and (we are) awaiting results," Wasieleski said. "If we are not, we will be looking for matches elsewhere."

The community support has been outpouring for Austin and he's got a whole army behind him fighting the battle.

" 'Austin's Army' was created to show Austin community support and how many people care about him," Wasieleski said. "At a time like this, community support is huge."

"All the help and support by the community is awesome and well deserving for him," says long-time friend Wyatt Chittenden. "With his recent diagnosis of cancer, it was heartfelt by everyone close to Austin because everyone knows how great of a person Heineman is. He always can put a smile on your face and give you a good laugh as well as always being there for people."

Austin's Army has done many fundraisers to help including a chicken barbecue, benefit gathering, piercing drive, and most recently a Facebook promotion at City Slickers.

Anyone interested, may join the army by making a donation to Austin and Austin's Army, through the Five Star Bank in Batavia.

Photo: Austin at one of his benefits with friend Kaela McMartin, who is one of the many members of Austin's Army.

Saturday, May 5, at the East Pembroke Fire Hall pavilion, Austin's Army will be holding a benefit for Austin Heineman (son of Jason Heineman and Jamie (McGiveron) Wasielewski). Austin is an 18-year-old Pembroke High School senior who was recently diagnosed with a rare, aggressive form of childhood cancer.

The benefit runs from 4 to 11 p.m. and the fire hall is located at 2623 W. Main Road, East Pembroke.

There will be Chinese and silent auctions and side raffles. Some of the raffle items are a 32" flat-screen TV, a Sabres Jersey signed by 15 of the players, an X-Box and Kinect package, four Adirondack chairs, a large primitive hutch and three signed Philadelphia Eagles Jerseys (#7 Michael Vick, #10 DeSean Jackson, #24 Ninamdi Asomugha).

Entertainment will be provided by local bands Unruly and Mr. Hand. There is no entry fee. Food and beverages will be available for purchase.  

All proceeds from the benefit are to help offset costs not covered by health insurance. Donations are welcome and may be sent to Austin’s Army, c/o First Niagara Bank, Batavia NY 14020.

Submitted by Tammy Cassidy:

Oakfield-Alabama Elementary School employees, pictured in their “Fight Like a Girl” T-shirts, show support for Mrs. Esther Goodrich, who is battling breast cancer. Mrs. Goodrich is the wife of the school district’s Director of Special Education, Mike Goodrich. Thanks to elementary school Principal Mark Alexander, teachers and staff enjoyed a dress down day. All proceeds will benefit Genesee Cancer Assistance.