MIDDLEFIELD >> Samantha Pacelli has worked year round to put on a special fundraising event through the state’s Pediatric Hydrocephalus Foundation chapter in hopes of finding a cure for those affected by the brain condition.

On Tuesday, July 9, community members can help in the cause when Lyman Orchards hosts the second annual Hydrocephalus Awarness Golf Tournament. The PHF is an all-volunteer, nonprofit charitable organization that aims to raise awareness and provide assistance against the illness.

Pacelli, the state director for the PHF, feels the event will hold a special meaning for her 3-year-old son, Luca, who has hydrocephalus. She couldn’t get through her opening speech at last year’s event without showing any emotion, she said, but hopes it’ll be a smoother process this year.

“Raising awareness is my number one goal,” said Pacelli. “Thinking about it now, I get all teared up. I’m a very emotional person, so it’s overwhelming.”
Around 140 people came out in support last year, but with the backing of Lyman Orchards, Pacelli anticipates a bigger turnout this year.

“The crew has been very supportive of the efforts,” Pacelli said.

The Hydrocephalus Awareness Golf Tournament also includes a luncheon with a raffle drawing after the golfing session. Registration begins at 8 a.m. at Lyman Orchards with a shotgun start set for 9 a.m. The cost is $165 per player and includes the luncheon, while registration for the luncheon itself costs $50.

Contact Samantha Pacelli at 203-710-1031 or hydrocephhope@aol.com for more information.

Samantha Pacelli’s handsome little boy Luca is among one in 500 newborns born with pediatric hydrocephalus (PH); a perilous condition more commonly known as “water on the brain.”

“Hydrocephalus is a lifelong brain condition where cerebral fluid builds up in the brain, typically in young children, enlarging the head and sometimes causing brain damage,” said the North Branford resident.

Named Connecticut State Chapter Director for the Pediatric Hydrocephalus Foundation (PHF) in 2012, Pacelli established the very successful PHF golf tourney that same year. Now, she’s seeking support for the second annual PHF Golf Tournament, coming July 9.

Last year, 140 golf tourney participants and numerous sponsors (including Kids for Kids, United Insurance Group, Boyle Family, and many other business and personal supporters), helped Pacelli raise over $12,000 towards hydrocephalus research taking place at Children’s Boston Medical Center and Yale University Neurology Department. This year, Pacelli is hoping for 200 tourney participants, and seeks to raise $20,000.

The tournament will take place Tues. July 9 at the beautiful Lyman Orchards Golf Club in Middlefield. A $165 per player fee includes green fees, cart, luncheon with beer and wine. For non-golfers, Pacelli offers a luncheon-only option ($50 per person).

One hundred percent of event proceeds benefit efforts of PHF, a 501 (c) (3) organization providing support, education and advocacy for individuals, families and medical professional dealing with the complex issues of hydrocephalus.

PHF is committed to increasing awareness and research on the diagnoses and treatment of hydrocephalus and bringing it to the forefront of public attention. It’s a priority for everyone touched by this condition, because right now, there is no cure, said Pacelli.

“The standard treatment is surgical implantation of a shunt. Averages of 40,000 shunt operations are performed each year in this country. Due to the lack of advancements in treatment methods, many people with hydrocephalus are unable to lead full and productive lives,” she said.

For more information on the July 9 PHF Golf Tournament, including registration and sponsorship, contact Pacelli at (203) 710-1031 or by email at hydrocephhope@aol.com

Luca Pacelli was diagnosed shortly after birth with a rare brain condition, called hydrocephalus.

“Hydrocephalus is a lifelong brain condition where cerebral fluid builds up in the brain, typically in young children, enlarging the head and sometimes causing brain damage,” said Pacelli.

1 in 500 newborns are born with this brain condition.
Luca underwent two brain surgeries only weeks after birth, including endoscopic third ventricolostomy surgery and a VP shunt placement, his mother said.

While Luca was undergoing surgery, Pacelli looked for support groups to reach out to in Connecticut and found none.

“I look back at this horrible time in our lives and realized I didn’t have a clue as to what the doctors were diagnosing my son with,” said Pacelli. “I didn’t realize this would be a lifelong condition. I looked for support groups in Connecticut and there was not one.”

Many other families have faced the same struggle as the Pacelli’s does, and when searching for support groups, have come up short as well.

Pacelli, now Connecticut state director of the PediatricHydrocephalus Foundation, has worked hard to change this.
Pacelli aims to support and console other families dealing with hydrocephalus. She works at educating these families on their child’s condition.

As a part of her work to support families with hydrocephalus, Pacelli organized the First Annual PHF Golf Tournament.

Pacelli is holding the PHF Golf Tournament to raise awareness and raise money towards research for curing hydrocephalus.

“You never know when your kids going to need another brain surgery and that’s what my whole thing is, there has got to be another way,” said Pacelli.

Pacelli is asking for “In Kind” donations and sponsors. Sponsors include raffle goods, tee and putting sponsors, breakfast sponsor, players, and small monetary donations.

The PHF Connecticut State Chapter First Annual Golf Tournament is being held July 10 at Lyman Orchards Golf Club. It is located in Middlefield, at 70 Lyman Road.

It is $165 per player fee, which includes green fees, cart, luncheon with beer and wine. For non-golfers, there is a luncheon-only option, costing $50 per person.

For more information on registration and sponsorship, contact Pacelli at (203) 710 1031 or at hydrocephhope@aol.com.

All of the proceeds are tax deductible and will be donated towards research on this condition.