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Local Woman Walks For a Cause

Members of Team Tavilla share their story on how and why they've raised $40,000 for the third annual 5K brain tumor walk this Saturday, Oct. 13.

Brain tumors are oftentimes fatal, compared to other forms of cancer. Aiding in the fight against them, Team Tavilla has raised $40,000 so far for the National Brain Tumor Society's third annual walk, Saturday, Oct. 13, on DCR Mother's Rest at Carson Beach, in Boston. Registration begins at 8 a.m., while the program and activities lasts from 9:30 a.m. to noon. Participants can walk, run, jog, and push strollers or wheelchairs.

Susan Tavilla, of Lynnfield, is teaming up with 60 people in honor of her mother, Ginny, 80, whose tumor unfortunately has recurred. Susan is the second oldest of eight. Ginny was diagnosed with Stage 4 Glioblastoma (the furthest stage) April 10, 2010, and despite a three-month life expectancy, is a living miracle today. As the chairperson of Team Tavilla-Clarke, it takes Susan three to four months to plan. Ginny has proven doctors wrong, and two years and five months later, still participates in the walk with her friends and family.

"It's a special but hard year for us," Susan Tavilla told Lynnfield Patch. "The walk had to be moved to a different place, because it's larger. You might think that's a good thing, but it's sad, because it means more people are walking in memory instead of in honor of their loved ones. Once you know one person, you know 10. That's the sad part."

The event was previously held at Castle Island in South Boston. Also different from last year, Team Tavilla will sport a banner with individuals' names of those affected by brain tumors -- both survivors and those gone before us. To view last year's article, visit http://peabody.patch.com/articles/peabody-woman-raises-funds-for-brain-tumor-society.

One of the walkers is friend and business associate Louie D'Alleva, of Lexington. "In Loving Memory/ Louie D'Alleva/Survived 3,380 days" is pictured on the back of the team T-shirt, and Susan will make a speech about him. 

Tavilla actually became the chairperson of the walk when she promised D'Alleva the week before he died that she would do it for him, his young adult children, and her mom. Teammates often walk and talk about the pictures on each other's T-shirts and experiences with their loved ones. Survivors receive their own T-shirts. To give back, survivors can also volunteer for and at the walk.

D'Alleva's daughter, Caitlin, wrote on the NBTS Web site, "Thanks for all the loving support you've given us the past few years. You're the strongest and most discerning people we know -- you've given us the encouragement needed to stay positive through these battles."

According to Sandy Tavilla Smith, of Medford, Tavilla's sister, they have raised three times more than anyone else, with the runner-up having raised $15,570 as of press time, with the walk only a few weeks away. The Tavilla's father died after a year-long battle with stage one throat cancer at 62 years old. Team Mya, of Marblehead, in honor of an 11-year-old girl who has a brain tumor, was their biggest competition last year, but won't walk this year since she started a charitable foundation to help children in the hospital.

The first year, Team Tavilla raised $29,000, and the next year, $36,000, with a combination of 150 companies and individuals making financial donations and buying tickets. That amounts to a total of $105,000 over three years, which is Susan Tavilla's biggest accomplishment in her lifetime.

They've accomplished this through bake sales with large paper shopping bags full of goodies, costing $100, raffling off four Red Sox tickets behind the visitor's dug-out, and contacting people directly through phone calls, letters, and emails to ask for donations.

"I don't like to ask people for money," Susan Tavilla teary-eyed explained, "But when people don't know what to do or say, they can write a check, or buy raffle tickets. We aren't doctors, but it's something we can do. They then write notes with the check -- 'Good job,' 'Thanks for doing this,' or 'We're going to walk this year and do this for you.'"

Despite financial success, the weather will have an impact on the day's turn-out. 

Tavilla's sister-in-law Denise Tavilla, of Winchester, noted last year the weather was beautiful; last year, it was rainy, and the turn-out was disappointing. Regardless of the temperatures, eight of her children and seven grandchildren will be there for moral support. The 3.1-mile walk also features fun family activities, raffle prizes, food and beverages, and awards for the top fundraisers.

"I like to see Ginny's expressions, especially when she sees someone she hasn't seen in a long time," Denise Tavilla continued, I'm also walking for Allyson Citro, 11, of Winchester, a little girl at my son's school."

Since they can't physically take the tumor away so that she can spend years with her grandchildren, they walk, bake cookies, write letters, make T-shirts, and spend the day together as one.

"It's worth being a part of and raising money for between the research and support," Sandy Tavilla said.

They also went to a support group for caregivers at Lahey Clinic in Burlington to learn what to expect, sponsored by the National Brain Tumor Society. Ginny Tavilla receives chemotherapy and radiation from the neurology department there.

The day is bittersweet, as it reminds them of the cause they are there for, but it is also a solid time of fellowship.

One of the major symptoms is a loss of speech since it alters the language section of the brain. Ginny's best friend noticed this change.

"She's classy, and when it was determined she wasn't making normal, quick remarks, we knew something was up," Denise Tavilla continued, adding it is uplifting she's made it this far.

Tumors usually recur, which is why treatment only lasts so long, and why gray is the featured color.

But her faith has kept her family strong, and the team won't give up fundraising or walking until a cure is found.

"We really feel very blessed," Susan Tavilla, who attends Grace Chapel in Lexington, explained, "We're very much a family of faith, and believe God gave us this extra time with her. She has an army of people praying for her," adding she appreciates the fact there's people out there trying to not help just Ginny, but everyone who's in her situation.

To register, visit www.BrainTumorWalk.org/Boston. 

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