By Stephanie Mariel Petrellese

Jake Genova Join the Genova family of Garden City as they take "great strides" in raising awareness and money for cystic fibrosis research on Saturday, May 10, and help them meet their personal goal of $100,000. The walk will be held this year at Hofstra University at 11 a.m. Registration begins at 9 a.m.

Matt and Danielle Genova, along with their sons Jake and Max, have been very active in Great Strides, the Cystic Fibrosis Foundation's largest national fundraising event, since Jake was diagnosed with the disease in 2002. In 2003, Danielle and Matt organized "Jake's Team" and every year since, the family has worked tirelessly to raise money and awareness. Last year they reached their personal goal of $100,000, and are now excited with the prospect of surpassing that amount this year.

The Garden City News has followed the Genova family for the past three years. One of the most significant changes during that time has been the support they have received from local school and community organizations. Last year, the Welcoming Club of Garden City selected cystic fibrosis as their philanthropic cause and was very successful in raising local awareness and funds.

This year, the family was able to generate even more community and school interest. SADD (Students Against Destructive Decisions) clubs from North Bellmore, as well as members of the Garden City High School Key Club, will all be participating in the Great Strides walk.

The band Push Play, whose guitarist-keyboardist is Steve Scarola, a senior at Garden City High School, will be playing on April 26 at Nokia Theatre Times Square. As part of their "Push Play for a Purpose" tour, the band will donate a portion of the merchandise sales to the foundation, as well as other charities.

Fortunately, Jake's health has remained fairly stable. Now almost nine years old, he has recently earned an orange belt in a local karate class and is preparing for his first guitar recital in June.

However, he must go through a daily regimen so he can remain active. 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 six to eight weeks Jake has a check-up at the CF Center at Schneider Children's Hospital.

One way Danielle generates interest in their cause is by speaking at elementary schools about the disease. Cystic fibrosis (CF) affects 30,000 people, making it the most lethal genetic disorder in the country. 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.

In the past five years, the CF Foundation has given over $600 million to pharmaceutical companies to drive potential drugs through the "research pipeline." Still, Cystic Fibrosis receives no federal funding and must rely on money raised through the efforts of families afflicted by the disease.

"A cure is so close to being found, but once again the science is ahead of the funding," wrote Danielle and Matt in their fundraising letter. "We cannot afford to have one potential drug in the pipeline removed because of a lack of funds - what if it is the cure? How could we possibly live with that?"

The CF Foundation recently announced promising results from an early phase 2 study of an oral compound developed in collaboration with Vertex Pharmaceuticals that targets a basic defect in cystic fibrosis. Patients who took the drug showed significant improvement in several key CF measures, including lung function, nasal potential difference measurements and sweat chloride levels. This is the first time that any potential therapy has improved function at the cell level.

To join "Jake's Team," visit www.cff.org/great_strides/JakesTeam, and click on "Click to Donate." You do not have to actually walk to become a member of "Jake's Team." For more information, call Danielle Genova at (516) 248-8686.

If you prefer to mail a donation, make checks payable to "The Cystic Fibrosis Foundation" and mail to 80 Wellington Rd., Garden City, NY 11530. More than 90 cents of every dollar raised goes directly to funding the potential cure for this disease.

Those Garden City residents who will be spending time out east this summer may want to mark their calendars: On August 10, the Long Island Chapter of the Cystic Fibrosis Foundation will sponsor the Toast to the East End Wine Auction at Martha Clara Vineyard in Riverhead from 3 to 7 p.m. The afternoon will feature an outdoor party with buffet dinner, Martha Clara wines, live music, a wine auction, raffles and much more. For more information, visit www.cff.org/Chapters/longisland/ or call Emily Clark at (516) 827-1290.

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