Community Gathers to Walk for Cystic Fibrosis

Thousands gathered at the Holtsville Ecology Center on June 3 for the 21st annual Great Strides 5K Cystic Fibrosis Walk.

According to Arlene Dayboch, Senior Director of Development for the Long Island chapter of the Cystic Fibrosis Foundation, the Foundation was started in 1955 by a group of parents concerned that nothing was being done for patients.

Dayboch defined cystic fibrosis is a genetic disorder that critically affects the lungs and sometimes other organs. People who are diagnosed with the disease can have extreme difficulty breathing and often have a shortened lifespan. In the early 1950s, children with the disease were not expected to live past age five; today the average age expectancy is 37.

Thirty-five year old Kristy Fabrizi, from Bellerose Village, captained a team called ‘Little Miss New Lungs." The title was based on her undergoing a double lung transplant in 2011. Fabrizi was on a waiting list for over 13 months.

“When [the doctors] referred me, they said that my lung function was at 30% and I was no longer responding to the medication, I had become allergic to every IV medication,” Fabrizi said. “It was really hard to breathe. It always felt like there was an elephant on my chest. It became a dire situation. While I was waiting, my lung function kept decreasing - towards the end it was at 14 percent. The doctors told me that there was nothing else they could do.”

Fabrizi is excited by the changes she has seen so far in her life.

“Life has changed completely. Before, I would not be able to do two steps in my mom’s house; now, I’m currently training for a 10K in July. I’ve never run in my whole life and I’m actually kind of nervous. If I walk it, I walk it but I will be finishing it,” Fabrizi said.

East Islip resident Dayna Norton is also affected by cystic fibrosis and was released from the hospital just days prior to the walk. Determined to raise awareness, Norton was surrounded by a large group of friends and family members while walking the 5K.

“We came out today to raise money and awareness to find a cure for this [disease]. If we find a cure, we can live a lot longer and have a better life. I have three children and I want to be around for them as long as I can,” Norton said.

Two of Norton’s three children are also affected by the disease.

A new medication was recently released which helps reduce symptoms for four percent of all cystic fibrosis patients.

“The most important thing to realize about Cystic Fibrosis is that the scientific progress has just been unbelievable. The more that we do to support the research, the better we can keep increasing people’s lifespans,” said Silan Akgul, a summer intern with the Cystic Fibrosis Foundation.

Happening for over 20 years, the walk is instrumental in raising funds and awareness for a cure for cystic fibrosis.

“We are hoping to grow the walk each year and make it bigger and better," Dayboch said. We are looking for more corporate support. We want to cure this disease."