By Stephanie MarielPetrellese

Jake Genova (center), and his best friends Julianna Brogan from North Bellmore and Tristan Thornhill from Tennessee, at last year's Great Strides walk. Join the Genova family of Garden City as they take "great strides" in raising money for cystic fibrosis research on Saturday, May 5, and help them meet their personal goal of $100,000. The walk will be held this year at Nassau Community College at 11 a.m. Registration begins at 9:30 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 fund-raising 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. In 2005, their hard work earned them the Long Island chapter of CFF's "65 Roses Award." Last year they raised more than $83,000, which is triple what they raised during their first year of fundraising in 2003.

Earlier this year, Danielle and Matt were nominated by CFF's Long Island chapter to be its Volunteer Leadership Initiative (VLI) co-chairpersons. The VLI is an important non-medical initiative undertaken by the Cystic Fibrosis Foundation (CFF). Only with the continued infusion of new leadership volunteers can the CFF extend their reach within every community. Also this year, the Welcoming Club of Garden City selected cystic fibrosis as their philanthropic cause. The group has been very successful in raising local awareness and funds.

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.

According to Robert J. Beall, president and CEO of the Cystic Fibrosis Foundation, "Cystic Fibrosis Foundation researchers have reached a critical juncture. For the first time, they are working on treating the defect itself, rather than the symptoms of CF. Unfortunately, also for the first time in recent history, CF scientific opportunities are outpacing the CF Foundation's ability to fund them. But how can we take even one project off the table when it could be the cure?"

Last year's breakthrough was an inhalation treatment utilizing basic salt water called Hypertonic Saline. This concentrated saltwater solution improved airway clearance for CF patients.

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.

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."

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.

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