Pediatric Hydrocephalus Foundation Introduces Rhode Island Chapter

For Immediate Release
Contact: Kimberly Illions
Monday, November 9th, 2009
(732) 634-1283
http://www.HydrocephalusKids.org
kim@hydrocephaluskids.org

Ocean State Joins Growing Nationwide Network

Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. (PHF) today formally announced Rhode Island as the newest official PHF state chapter, bringing to five the number of chapters nationwide.

“We are thrilled to welcome Rhode Island to the PHF family,” stated Michael Illinois, Vice President and National Director of Advocacy for PHF. “With every new chapter, we move one step closer to our goal of funding and finding a cure for pediatric hydrocephalus.”

RI State Director Rebecca Minasian echoed this goal, explaining her motivation for taking leadership of the new chapter: “Imagine having a child and when she gets sick, has a headache, or just seems not herself, your first thought is taking her to the emergency room. That’s what it’s like for me and many parents of children with hydrocephalus.”

Minasian’s daughter, Caitlin, developed hydrocephalus when she was just a few weeks old as a result of E-coli meningitis. She was born 12 weeks early along with her twin brother and was too small to fight the infection. “My little girl was still under 5 pounds and only 8 weeks old when her first shunt was placed to relieve the pressure,” Minasian shares. When the shunt failed, “[i]n less than 24 hours, she went from playing with her brother to laying in the emergency room fighting for her life. That is how fast many children with hydrocephalus can show symptoms of shunt failure.

“As a result of the hydrocephalus and the brain trauma that occurs with every surgery, Caitlin also has cerebral palsy,” Minasian added. “She endures multiple sessions of physical, occupational, and speech therapy along with therapeutic horse riding to help her achieve her goals. This is all part of the reason I chose to get involved with Pediatric Hydrocephalus Foundation, Inc. and help fund research for the condition.”

Occurring in approximately 1 of every 500 births, hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

“There are too many children who have daily struggles as a result of this condition,” Minasian noted. “My goal is to hold fundraisers throughout the state to fund research and medical equipment that may help in hydrocephalus-related surgeries. I would also like to help parents and their children [who are] dealing with this complex medical condition connect with others dealing with similar situations.

Rhode Island joins chapters in Missouri, California, Georgia, and New York as well as PHF’s founding chapter in New Jersey.

About PHF

The Pediatric Hydrocephalus Foundation, a non-profit 501(c) (3) charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.

The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible. For more information, visit www.hydrocephaluskids.org.