Support Local Team In CF Walk

2006-04-28 / Community

ByStephanie Mariel Petrellese

For three years, the Genova family of Garden City has taken "great strides" in raising money for cystic fibrosis research, and will do so again on Saturday, May 6.

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. The walk will be held this year on May 6 at Nassau Community College at 11 a.m. Registration begins at 9:30 a.m.

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.

Last year, the family raised a record-breaking $60,000 to help reach CFF's national goal of $28 million. Their hard work earned them the Long Island chapter of CFF's "65 Roses Award."

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?"

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

To join "Jake's Team," visit www.cff.org, and click on the "Great Strides" banner in the upper right-hand corner. You do not have to actually walk to become a member of "Jake's Team."

To make a contribution, make checks payable to "The Cystic Fibrosis Foundation" and mail to 80 Wellington Rd., Garden City, NY 11530.

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

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