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Cystic Fibrosis

Runners take off at the 2017 Breathe for Britt 5K. Photo from Megan Scheidt

Smithtown runners are preparing to take big strides and breathe deep to support a local nonprofit that helps people suffering from cystic fibrosis.

The Breathe for Britt Foundation, a nonprofit dedicated to supporting people suffering from cystic fibrosis and their families, will be hosting its 4th annual Breathe for Britt 5K run/walk June 2 at the Smithtown Elementary School. The funds raised from the race will be used to support the foundation in its efforts to help those diagnosed with cystic fibrosis and their families.

“This race lets people become aware of what CF is and what the foundation has to offer to them and those with CF who might not know this is offered to them,” Louise Nichols, the co-race director for the Breathe for Britt foundation, said.

Started in 2015, the race has grown to have 150 runners last year of all ages. Laura Bence, director of the Breathe for Britt Foundation, said she expects a similar number of people to attend this year’s event.

Brittney Braun. Photo from Breathe 4 Britt Foundation

The foundation runs multiple programs to emotionally and financially support those suffering from cystic fibrosis and their families. The organization has bought groceries, laptops and even paid the electric bills for
affected families who could not afford it. Bence and her organization has also helped patients make doctors’ appointments and taken them to the hospital when they had no other means.

The nonprofit also provides opportunities such as doing salon work for the patients in their hospital beds and even larger events like Gimme-a-Break! Day, when every month a different patient from the Cystic Fibrosis Center of Cohen Children’s Medical Center in New Hyde Park is brought on a day out to a concert, amusement park, sporting event and more.

“Some of our patients can be in hospitals for months at a time, and it can be so difficult to feel normal,” Katherine Henthorne, a cystic fibrosis social worker at Cohen’s Medical Center and Long Island Jewish Medical Center said. “It’s just so important for their quality of life. Some of our patients are affluent, they are wealthy and they have things, and other families don’t. They have to make them feel like normal people.”

The foundation is named after Brittney Braun, a young woman with who died from complications  of cystic fibrosis at the age of 14. Those who remember her know that she had a knack for putting life into perspective.

“She had a lot of spunk, a lot of personality, even if she went through a lot,” Bence said. “She was the type of person that you had to earn her love and respect, but once you did she was amazing. She had such a big impact on my life in the years that I knew her.”

Kings Park resident Brian Kane, who volunteered at Stony Brook University’s Children Hospital and became Brittney’s godfather, helped to found the organization along with Bence. He passed away in 2012.

Bence said she remembered how shortly after Brittney’s death Kane gathered her and others who knew Brittney so they could focus their loss into something positive.

[Brittney’s] story was very sad, but to have this in memory of her, it’s really amazing.”

Katherine Henthorne

“I took the [director] position to honor both of their memories,” Bence said.

Cystic fibrosis is a disease caused by a genetic mutation that forces the body to produce a thick mucus along the organ’s lining. That mucus builds up over time in the lungs, pancreas and other organs, trapping in bacteria that can lead to infections and extensive lung damage.

Approximately one out of every 31 people in the United States are carriers for cystic fibrosis, according to the nonprofit Cystic Fibrosis Foundation. If both parents are carriers, there is a 25 percent chance the child will be born with the disease. The average life expectancy for those afflicted who live past childhood is approximately 43 years, according to the Cystic Fibrosis Foundation.

“Most of our patients unfortunately die from respiratory failure,” Henthorne said. “[Brittney’s] story was very sad, but to have this in memory of her, it’s really amazing.”

The Breathe for Britt 5K will take place at Smithtown Elementary School, located at 51 Lawrence Ave. in Smithtown. Preregistration costs $25 for adults, $20 for those age 17 and under. Day of registration costs $30 for adults, $25 for those age 17 and under. Awards will be given to the top three male and female
finishers in each age group.

Check-in will run from 7:30 to 8:30 a.m. with the race starting at 9 a.m. rain or shine. For more information, contact the race director at breatheforbritt@yahoo.com.

From left, Zoey, Emily Ciano, Lucas, Debbi Haupert and Smithtown Supervisor Ed Wehrheim watch the rose bush being planted May 10. Photo by Kyle Barr

Five-year-old Lucas Cianci watched Town of Smithtown officials plant a rose bush in front of town hall May 10. He could watch, but he wasn’t allowed to go touch it or play in the dirt. Lucas knew the reason why –he has been diagnosed with cystic fibrosis.

Lucas Ciano, 5, enjoys his new Kindle Fire. Photo from Debbi Haupert

“Cystic fibrosis is extremely germ driven, even by bacteria contracted in water and soil, which really is everywhere,” Lucas’ grandmother, Debbi Haupert of Smithtown, said. “[Lucas] knows he’s different. He knows he’s restricted from doing things that other children do.”

Cystic fibrosis is caused by a genetic mutation that causes a thick buildup of mucus in the lungs, pancreas and other organs. The mucus traps bacteria inside the organs which leads to infections and extensive lung damage.

Smithtown town officials pledged May 10 to plant 65 rose bushes in the upcoming weeks in honor of National Cystic Fibrosis Awareness Month this May with the help of several local civic  and community groups.

The story behind the 65 Roses Project dates back to 1965 when 4-year-old Ricky Weiss, who when he first diagnosed with the disease could not say cystic fibrosis, but called it by the closest approximately he could “65 Roses.”

Supervisor Ed Wehrheim (R) also gave Lucas a bag of superhero toys with a Kindle Fire so he can read books without having to pick up books that might have bacteria on them. When Lucas opened the Kindle, there was a personal message on it calling him a superhero.

“You know who else have genetic mutations? Superheroes,” Wehrheim said to Lucas. “You’re our superhero.”

Every day Lucas, a Merrick resident, has to go for airway clearance treatments that can last 20 to 30 minutes at a time. As people with cystic fibrosis get older, the treatment can take as long as four hours.

“You know who else have genetic mutations? Superheroes. You’re our superhero.”
Ed Wehrheim

“It’s a progressive disease, so as the years go by the need for additional treatments increases,” Lucas’ mother Emily said. “Right now, it’s not overwhelming for us, but it’s hard. It’s hard telling [Lucas] to sit still during treatment – he’s just a kid.”

Approximately one out of every 31 people in the United States are carriers for cystic fibrosis, according to the nonprofit Cystic Fibrosis Foundation. If both parents are carriers, there is a 25 percent chance the child will be born with the disease.

Lucas’ mother, Emily Ciano, a graduate of Smithtown High School, said that before she became pregnant she could not imaginethat she or her husband, James, were both carriers for cystic fibrosis.

“I was blindsided with it while I was already pregnant with Lucas,” she said. “It’s overwhelming to find out this information when you could have found out before hand with a simple blood test.”

Smithtown spokeswoman Nicole Garguilo plants a rose busy in front of town hall May 10. Photo by Kyle Barr

She expressed how important it is for prospective parents to get tested for being cystic fibrosis carriers before they make any decision. The American Academy of Obstetricians and Gynecologists recommends that doctors offer pre-pregnancy screenings to all women.

Ciano said she has marveled at the strides that researchers have made in treating cystic fibrosis, and is optimistic that by the time her son needs more extensive treatment that there will be more options offer to help him.

Many area community organizations have pledged to help spread awareness of cystic fibrosis by joining the town in its 65 roses project. Local leaders including Rob Cartelli, of the Smithtown Chamber of Commerce; Tony Tanzi, president of the Kings Park chamber; Vincent Puleo, of the Nesconset chamber; and Kerry Maher-Weisse, Bill Capurso and Mario Mattera of the Community Association of Greater St. James have all made commitments to planting rose bushes at various plazas and parks in their respective hamlets. Bob Souto and Marie Gruick volunteered the assistance of the Nesconset Civic Association to help with the planting.

Smithtown residents who wish to be part of the 65 Roses project are encouraged to post photos of roses they plant in their yard on Twitter with the hashtag #65RosesSmithtown.

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Brittany Braun, 14, with her godfather, Brian Kane, at her first communion in the winter of 2007-08. File photo

The Breathe for Britt Foundation Ltd. presents the second annual Breathe for Britt 5K Run/Walk on Sunday, June 5.

The Breathe for Britt 5K will bring together athletes of all abilities as well as community organizations and local businesses to support those with cystic fibrosis. All proceeds from the event go to the Breathe for Britt Foundation Ltd., a registered nonprofit organization. The Breathe for Britt Foundation was created in memory of a young cystic fibrosis patient and benefits Long Island families affected by this genetic, life-threatening disease.

The race will start and finish at the Gazebo across from Nesconset Plaza, 127 Smithtown Blvd., Nesconset.

Registration starts at 7 a.m. and the race will begin at 8:30 a.m., rain or shine. The event is a USATF Certified and sanctioned 5K — 3.1 miles. Timing is provided by Just Finish Inc. The race is a beautiful, paved course through residential streets of Nesconset.

Participants are encouraged to register in advance online at www.justregister.net for reduced registration fees.

Registration fees are as follows: adult, $25, day of race, $30; 17 and under, $20, day of race, $25.

Preregistration must be postmarked by May 29. The event is family friendly and open to both runners and walkers of all ages and abilities. Awards will be presented to the overall top three male and female finishers and top three males and females in each age group.

Business sponsorships are still currently available. Companies with four or more participating employees are also eligible to be acknowledged as a race sponsor. Visit www.breatheforbritt.org or call Laura at 631-413-0605 to take advantage of this team building opportunity.

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