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  • PHF’s Cessilye Lawson Interviewed on Fox16 TV Arkansas

    September 26, 2012 by  
    Filed under Uncategorized

    AR KIDSfest raises awareness about brain condition

    Watch Interview HERE

    LITTLE ROCK, AR – Sunday, an Arkansas woman organized the Little Rock KIDSfest to raise awareness about a rare brain condition impacting her son’s life.

    Hydrocephalus has no cure right now and happens when fluid builds up inside the skull leading to brain swelling.

    Cessilye Lawson is the Arkansas State Chapter Director for the Pediatric Hydrocephalus Foundation.

    “We’re here to find a cure. There’s no cure for hydrocephalus. Many children endure several brain surgeries because the treatment right now is several brain surgeries. The treatment right now is an implanted device in their brain,” says Lawson.

    Her son, Taylor, has the rare brain defect which causes baby’s heads to double their normal size.

    Sunday, Lawson organized the first Little Rock KIDSfest to help find a cure for the brain condition which affects about one-million Americans.

    “Last week we had one that passed away. She was four and she had endured 25 brain surgeries, so this today is dedicated to McKinna,” says Lawson.

    Lawson brought in a petting zoo, fire trucks and bounce houses to allow kids to have fun while their parents raise awareness to try to find a cure.

    “If we all stick together, we can make it better for the cause,” says father Neil Hood.

    “This is something we can do to try to raise money and awareness and help in any little way,” says mother Karen White.

    “My three little girls, they don’t have it, but they could have it. So it’s always good to donate, especially for the kids programs,” says volunteer Calvin Key.

    The Little Rock KIDSfest wraps up at 8 p.m. Sunday, but organizers do hope to make it an annual event.

    CONGRESSMAN LANCE: SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH

    September 24, 2012 by  
    Filed under Uncategorized


    WASHINGTON– Congressman Leonard Lance (NJ-07) issued the following statement in support of September as National Hydrocephalus Awareness Month.

    “Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus.

    This condition can occur at any age and affects an estimated one million Americans.

    In fact, one out of every 500 babies in the United States is born with hydrocephalus, making the condition the leading cause of brain surgery in children. Additionally, an increasing number of our veterans are developing post-traumatic hydrocephalus as a result of brain injuries suffered on the battlefield.

    Currently, there is no single known cause of hydrocephalus or ways to prevent or cure the condition.

    The National Institute of Neurological Disorders and Stroke is currently conducting research related to hydrocephalus prevention and treatment. However, more must be done at the community level to educate the American people about this surprisingly prevalent disorder.

    Recognizing the month of September as National Hydrocephalus Awareness Month will bring this disease to the public’s attention and, I believe, will encourage the discussions necessary to address more effectively the devastating effects of this disease and provide support to families who live with it every day. Today I commend the hard work of the Michael and Kim Illions of Woodbridge, New Jersey for their advocacy on behalf of their son, Cole.

    I am certain that with federal support for additional research we can develop a better treatment, and eventually a cure, for those suffering from hydrocephalus and help them live healthier, fuller lives.”

    In the House of Representatives, Lance is a founding member and co-chair of the Congressional Hydrocephalus Awareness Caucus and actively works to raise awareness of the disease.

    In the photo: Rep. Lance talks with Cole Illions of Woodbridge (NJ) whose parents Michael and Kim have worked tirelessly to educate members of Congress and the public about Hydrocephalus.

    Article on Hydrocephalus Flag-Raising Event in Woodbridge, New Jersey

    September 22, 2012 by  
    Filed under Uncategorized



    Featured in picture; Jeffrey W., Ally J., Cole Illions & PHF President Kim Illions & Vice President & National Director of Advocacy Michael Illions

    PHF’s Carrie Edgecomb & Daughter Interviewed on FOX26-TV

    September 21, 2012 by  
    Filed under Uncategorized


    The PHF’s very own California State Chapter Director Carrie Edgecomb and her daughter Maddy were featured live on Fox26 TV to talk about Hydrocephalus Awareness Month and the PHF California WALK & Family Fun Day on 9/30 in Fresno, CA.

    Four Year Old Girl Loses Battle with Hydrocephalus

    September 14, 2012 by  
    Filed under Uncategorized


    It is with so much sadness that I have to let you all know that we have lost another child to the horrible disease/condition Hydrocephalus!

    Our own PHF Ohio State Chapter Director, Brandy J., lost her little girl last evening. Please keep them in your prayers.

    Four year old Makenna is with the Angels now.

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