Jake Genova You would never be able to tell from watching six-year-old Jake Genova run around the kitchen of his home on Wellington Road that he is fighting the genetic disease cystic fibrosis. It's 4 p.m. on a recent Saturday afternoon and Jake has just finished playing in a soccer game. Now, along with his younger brother Max, the two take turns sheepishly peeking around the kitchen counter and then sprinting back to the basement. It's a game that has the children erupting with giggles, which adds some levity to the very serious topic his parents Danielle and Matt discuss at the dining room table.

For the past three years, the Genova family has dedicated themselves to raising awareness and money to fund research in the hopes of finding a cure for their son's disease. Cystic fibrosis (CF) affects 30,000 people, making it the most lethal genetic disorder in the country.

Unfortunately, it still does not reach the level necessary for national funding. "It's up to the families to drive awareness, and ultimately funding, to support the efforts in finding a cure," explained Matt.

Although researchers have discovered therapies and drugs that have extended the lives of people with CF, a cure has yet to be found. In 1989, scientists were able to isolate the defective gene that causes the body to produce the thick, sticky mucous that clogs the lungs and leads to life-threatening lung infections. The mucous can also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food. Some patients experience liver damage if the mucous blocks the bile duct.

A child must inherit a defective CF gene from each parent to have CF. According to the Cystic Fibrosis Foundation's (CFF) Web site, more than 10 million Americans are, like Danielle and Matt, unknowing, symptomless carriers. Every time two carriers conceive, there is a 25 percent chance that their child will have CF, a 50 percent chance that the child will be a carrier of the CF gene and a 25 percent chance that the child will be a non-carrier. Their son Max, who was born in February of 2002, does not have the disease, although he is a carrier.

In September, Jake began first grade at Homestead School. Even though his life is similar in many ways to other kids his age, he must start every morning with chest physiotherapy using an electronic vest. He also uses a nebulizer for inhalation therapy. These two therapies help combat mucous buildup in the lungs. He also takes Claritin and Singulair to control and prevent inflammation. Jake also takes enzymes before every snack and meal that contains fat to help him properly digest. He ends each day with another round of chest physiotherapy. Once every two months Jake has a check-up at the CF Center at Schneider Children's Hospital.

Jake is one of the more than 80 percent of people who are diagnosed by the age of three. The Genovas found out on a Thursday in September, 2002. On Friday, they awoke with a mission and began their lifelong dedication to the cause.

For three years the family has been very active in Great Strides, the Cystic Fibrosis Foundation's largest national fund-raising event. In 2003, Danielle and Matt organized "Jake's Team" and raised $27,000, which contributed to the more than $20.5 million that was raised nationally. In 2004, Jake's Team raised $33,000. Nationally, $24 million was raised. Also in that year, the Long Island chapter of CFF selected Danielle as their organization's outstanding volunteer. She was honored by the Junior League of Long Island at a volunteer merit awards luncheon at the Garden City Hotel.

This year, the Genovas raised a record-breaking $60,000 to help reach CFF's national goal of $28 million. "You're helping to add 'tomorrows' every day to Jake's life and all the lives of those with CF, and for that we are eternally grateful," they wrote in their thank you letter.

Besides Great Strides, the couple works during the year on smaller fund-raising projects. They serve on a committee that organizes the annual Evening in Monte Carlo. This year the event will be held on October 14 from 8 p.m. to midnight at the Crest Hollow Country Club. The evening will feature casino games including blackjack, poker, craps and roulette. An auction and raffle will also be held. All proceeds will go to the Cystic Fibrosis Foundation, which guarantees that 90 cents of every dollar will go toward research.

Danielle is also preparing for a potential cystic fibrosis benefit to be held on November 19 in St. Anne's McCloskey Auditorium in Garden City. The Strivelli Players will present a musical production of "Steppin' Out With Berlin, Gershwin and Porter." Since the final details are still being worked out, look in future issues of The Garden City News for more information.

For more information on cystic fibrosis, call the Cystic Fibrosis Foundation at (516) 827-1290 or visit www.cff.org.