NEWBURGH — Rebecca Lopez of Newburgh has for years quietly assisted the Pediatric Hydrocephalus Foundation’s New York State Chapter to help raise awareness and money to fund research projects on this rarely talked about, incurable brain condition. Lopez’s son, 10-year-old Isaiah, is fighting the disease, in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in over one million Americans today. Because of the lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives. Untreated, hydrocephalus can be fatal.

Wanting to do even more, Lopez decided to take a more active and public role, and asked about joining the New York Chapter as an additional state director and take on additional responsivities in the all-volunteer Pediatric Hydrocephalus Foundation.

“I am involved with the PHF to not only help raise awareness and fund a cure, but to let my son Isaiah know that I will support him anyway imaginable. My dream is to find better treatment options and one day, a cure,” Lopez said.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 35 state chapters, provides support to families, friends and children affected by this incurable brain condition. PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at the State and Federal levels to push for more research and support in the fight against Hydrocephalus. Since 2010, PHF has awarded over $350,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. For more information, visit hydrocephalusKids.org.

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YORKTOWN, N.Y. — The Pediatric Hydrocephalus Foundation and the Town of Yorktown will host the fifth annual New York Pediatric Hydrocephalus Foundation’s walk and family fun day for Hydrocephalus Awareness on on Saturday, Sept. 20, beginning at 11 a.m.
The walk will be held at Jack DeVito Memorial Park at Veterans Road and Commerce Street, Yorktown Heights.

The walk will have music, entertainment, exhibitions, raffles, games, food, face painting, child friendly activities and much more.

Registration is free and donations will be accepted. To register, visit www.active.com/donate/phfwalkny2014.

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MACOMB —

The mothers of two Macomb children with rare medical disorders have banded together to raise awareness.

On Wednesday, Carol Jackson and Mandi Green, joined Macomb Mayor Mike Inman to declare September as Hydrocephalus and Chiari Malformation Awareness Month.

Jackson’s daughter, Delaney, who will turn 4 in September, has hydrocephalus and Green’s son, Zak, 8, has been diagnosed with chiari malformation.

Hydrocephalus is a life-long condition in which an excess of fluid accumulates in the cavities of the brain.

Delaney, Zak and some of their respective family members joined Inman for the official proclamation.

In an emergency surgery when Delaney was 9 months old, a plastic shunt was implanted in her brain to drain away excess fluid.

Delaney had another surgery in February 2012 to replace the shunt and in October of that same year got an infection from the shunt.

She spent a month at OSF St. Francis Hospital in Peoria while recovering.

Today Delany is doing well, according to Carol.

Green described chiari malformation as, “in simple terms, his skull is too small for his brain.” The condition causes brain tissue to expand into the spinal canal.

Zak had a surgery in July in which some parts of his vertebrae were removed. Chiari malformation, according to Green, causes debilitating headaches and neurological pain.

The Green family will join the Jackson family at the 5K fall fun run/walk for hydrocephalus awareness, set for Sept. 13.

The cost is register is $25 for adults 18 and older and includes a race T-shirt. Children’s registration is $10 and also includes a shirt.

Those who register after Sept. 1 will not be guaranteed a shirt on race day.

Packet pick-up and late registration will be from 4:30 to 6:30 p.m. at Alan Thompson’s State Farm Insurance Office, 623 E. Jackson St.

Same-day registration will be from 7:45 to 8:30 a.m. at the Old Dairy, 201 S. Lafayette St. The event will begin at 9 a.m. Runners, joggers and walkers are encouraged to participate. Strollers are welcome.

Register online for the event at www.active.com/donate/phfrunil2014.

For more information, e-mail Carol Jackson at carol@hydrocephaluskids.org.

Reach Lainie Steelman via email at lsteelman@McDonoughVoice.com, or follow her on Twitter @LainieSteelman.

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YORKTOWN, N.Y. — Despite having an incurable brain condition and enduring more than 60 surgeries, Carli Clement is like any normal 16-year-old in Yorktown.

Carli suffers from hydrocephalus, a condition in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in more than one million Americans. Untreated, hydrocephalus could be fatal.

Carli was diagnosed with the disease at four months old when her head began to swell. Since her diagnosis, her father, Kevin Clement, has become heavily involved in raising awareness and funds to fight hydrocephalus.

“The condition is permanent,” Clement said. “We’re one of the fortunate ones. She’s a fairly normal girl. She misses school sometimes, but she lives a normal life with a few restrictions.”

Many people with hydrocephalus have developmental, physical or mental delays.

Last year, Carli started a group called Carli’s Angels and raised more than $5,000 for an annual walk in New York. Kevin Clement recently joined the New York chapter of the Pediatric Hydrocephalus Foundation.

“The disease affects a lot of people, but it isn’t widely known,” he said. “We get limited funding. All funds raised go exclusively to patients and their family. No one at the foundation takes a salary. We all work as volunteers driven by passion.”

On Sept. 20, the Clements will be hosting a walk for hydrocephalus at Jack DeVito Memorial Park. Vendors and exhibitors will be on hand along with dancing, a disc jockety and a bounce house. The Clements are still looking for sponsors.

“We’re looking to make it a great time and a great event for everybody,” Clement said. “This is very much a grassroots effort.”

Next month, the Clements will be in Washington, D.C., meeting with staff members and congressman on Capital Hill to continue to raise awareness.

Despite her condition, Carli plays sports and recently went to Paris and Rome for her 16th birthday.

“She had a wonderful time,” her father said. “She saw as many sites as she could. She doesn’t allow much to keep her down.”

For more information, visit www.carlisangels.org or e-mail Kevin Clement at kclement@hydrocephaluskids.org.

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Jackson’s son, Kashawn Stroman, 14, acquired hydrocephalus from a brain tumor. He’s undergone several surgeries to repair and replace a shunt that drains the fluid from his brain.

“When Kashawn was diagnosed, we had no idea what it was,” said Jackson, who is a Town of Binghamton resident.

The mother of three is now organizing a local chapter of the Pediatric Hydrocephalus Foundation, helping to raise money and awareness about the affliction and provide help for those affected by a diagnosis.

“I just thought it was something I wanted to be involved in to help other families, to have a support system for other families,” Jackson said.

Over the past several weeks, fundraisers have been planned and Jackson has reached out to local hospitals and people, sometimes through social media sites. Jackson has even come across people from her past who are also dealing with the condition.

“A friend I grew up with has two daughters with hydrocephalus,” she said.

Most of those affected with hydrocephalus are born with it, said Kim Illions, president and chief executive officer of the Pediatric Hydrocephalus Foundation. One in every 500 babies born has the disease. Others, like Stroman, get it from trauma to the brain, she said, noting that another type of the disease also affects the elderly. The excess fluid, if not drained, places potentially harmful pressure on the brain and can be fatal if left untreated, Illions said, and there is no cure.

Since there is little information out there, it’s vital to get the word out through organizations like the Pediatric Hydrocephalus Foundation, Illions said. The Binghamton chapter will be the fourth in New York, with others in Westchester and Orange counties and Manhattan, she said.

“It’s really important because there are families who have no support whatsoever,” Illions said. “They feel very alone.”