Durangoan, whose son has hydrocephalus, pressed for Colo. representatives’ support

The proclamation by Gov. John Hickenlooper designating September as Hydrocephalus Awareness Month came through the effort of a Durango woman whose son has the condition.

Christina Brown drafted a proclamation in mid-July and sent it to the governor’s office. She learned a month later it had Hickenlooper’s signature.

Brown’s son, 3½-year-old Jaden, has hydrocephalus, a swelling of the brain caused by an accumulation of the fluid that surrounds the brain and spinal cord, a condition found in one in 500 births.

About 1 million adults and children in the United States have hydrocephalus.

Brown said she found support from the region’s representatives in Washington, D.C., when she visited Capitol Hill with 140 members of the national Pediatric Hydrocephalus Foundation last week. The contingent represented the country from coast to coast.

Brown is the founder and director of the Colorado chapter of the Pediatric Hydrocephalus Foundation. She can be reached at christina@hydrocephaluskids.org.

She said U.S. Sens. Mark Udall and Michael Bennet and U.S. Rep. Scott Tipton appeared receptive when she urged them to support efforts to fund hydrocephalus education and research.

Brown said Jaden is doing very well and is receiving speech, physical and occupational therapy.

Contact Christina Brown at christina@hydrocephaluskids.org for more information.

The walk begins at 11 a.m. Saturday at Roosevelt Park in Edison.

The Pediatric Hydrocephalus Foundation will once again lace up their walking sneakers on Saturday for the 7th Annual Walk & Family Fun Day.

The day will begin at 11 a.m. Saturday, Sept. 7 at Roosevelt Park in Edison, and is free.

Donations will be accepted to benefit the Pediatric Hydrocephalus Foundation, a nonprofit organization founded by Woodbridge residents that raises awareness of the brain condition and money for a cure.

The day will include face painting, music, refreshments, “Jedi Knight Training” and appearances by characters from Star Wars, according to a press release from the organization.

Registration for the walk open at 10 a.m.

Contact Kimberly Illions at 732-634-1283 or kim@hydrocephaluskids.org for more information.

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