Family organizes cystic fibrosis fundraisers

By Rachael Scarborough King, Register Staff
April 16, 2008

GUILFORD — Two years after her daughter, Tiffani, was diagnosed with cystic fibrosis, Melanie DiNicola said she considers her family lucky.

Tiffani, 12, is in good health, although she must take preventive drugs every day. And, family and friends have joined the DiNicolas in raising money for the Cystic Fibrosis Foundation, a nonprofit that works to find ways to cure and control the chronic disease.

“A lot of the kids … they’re not as fortunate as us because they have more severe cystic fibrosis,” Tiffani said. “So that’s why we try to raise money.”

DiNicola said she feels a responsibility to support efforts to find a cure for the disease.

“Tiffany is very healthy — we’re very lucky,” she said.

Cystic fibrosis, which is genetically inherited, causes the buildup of mucus in the body that damages the function of the lungs and pancreas. Most people are diagnosed as young children, and about 30,000 Americans have the disease, according to the Cystic Fibrosis Foundation.

Since Tiffani’s diagnosis, the family has held several fundraisers for the foundation. At an event at their North Guilford home last year, the DiNicolas raised $165,000, all of which went to the foundation.

This year, they and other family friends have organized several events to raise money for the organization in support of Tiffani and another Guilford child with cystic fibrosis.

“People don’t realize what cystic fibrosis is until it affects them personally,” DiNicola said. “We have so much support through the community — it’s really nice.”

May is National Cystic Fibrosis Awareness Month, and the DiNicolas are planning to participate in the Cystic Fibrosis Foundation’s Great Strides Walk in Madison May 3. Tiffani’s cousin, Emilee Guerrera, 14, has also organized “Team Tiff” to participate in the West Haven Great Strides walk May 18.

Tiffani and a friend, Alexis Braumann, came up with the idea for “Tip a Tween,” where they and other Guilford teen-agers and almost-teenagers will act as the servers at three local restaurants and donate their tips to the foundation.

The first “Tip a Tween” dinner will be Tuesday at Whitfield’s on Guilford Green, the second is April 29 at Anthony’s of Guilford, and the third will be May 3 at Dockside Seafood & Grill in Branford.

“Me and my friends, we’re going to be serving,” Tiffani said. “You can buy a CF fact and we can all say something about CF and what it does to your body.”

Emilee, who lives in Cheshire, has also organized a fundraising event at the Universal Drive Friendly’s in North Haven. This Thursday, the restaurant will donate up to 20 percent of the night’s proceeds to the cause. Emilee is selling blue rubber bracelets with the word “breathe” to raise money, and has organized a dress-down day at her mother’s accounting office that will charge people $5 to wear jeans on a certain Friday.

“I kind of wanted to do something that I could give back … something personal that I could do to help,” Emilee, a freshman at Cheshire High School, said. “Even my friends have gotten into it, and now they have a reason to help.”

Last year, a friend of the family organized Ride for the Roses, a “motorcycle poker run” that raised money. Participants began at the Knights of Columbus, where they were given a playing card and a list of four other locations. They then rode to the other stops to pick up cards, and whoever had the best poker hand won a prize. This year, the ride will take place June 29 and costs $25 per rider and $15 per passenger, with $5 off for pre-registration.

And on July 26, DiNicola is planning to host “65 Roses: The Summer Soiree” at her home, a gala that last year brought in $165,000. She is also encouraging Connecticut residents to contact their state representatives in support of requiring that all infants be screened for cystic fibrosis at birth.

The “roses” designation comes from a child’s mispronunciation of “cystic fibrosis” as “65 roses.”

While decades ago, children with cystic fibrosis were often not expected to reach 10 years of age, the average survival age is now 37, according to the Cystic Fibrosis Foundation.

“I think it’s really rewarding to fundraise for something that you actually see the progress happening,” DiNicola said. “As much as I’m hopeful about the progress, I don’t want to minimize the importance of (finding a cure) now, because there’s a lot of people who are really, really sick.”

And what does Tiffani think of all her family and friends’ efforts to raise money to find a cure? “I think it’s really great,” she said.

Anyone interested in participating in the Great Strides walks for cystic fibrosis research can register online at www.cff.org/great_strides.

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