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  • PHF In The News: Easthampton fundraiser raises money for research into debilitating condition

    May 13, 2017 by  
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    bingophf

    EASTHAMPTON, Mass. (WWLP) – One Hampshire County parent prays that one day science finds a cure to the disease that’s afflicted her daughter since birth.

    Denise Sacharczyk of Westhampton organized a fundraiser Sunday at the American Legion Post 224 in Easthampton. Her daughter suffers from Hydrocephalus, or as it is more commonly called, “water on the brain.”

    Sacharczyk told 22News, “My daughter has had 23 brain surgeries because of that. She lives with chronic pain, any day not being able to walk. A couple of times, she’s had surgeries and learned to walk all over again.”

    Sacharczyk is active in the Pediatric Hydrocephalus Foundation on behalf of her daughter and other young people suffering from “water on the brain.”

    It’s estimated that out of 1,000 newborns, two will be afflicted by this disabling condition.

    Source:

    PHF In The News: Westhampton mother, daughter raise money for medical research

    September 23, 2016 by  
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    WESTHAMPTON — When Isabella Sacharczyk was about a month old, she was diagnosed with hydrocephalus, an incurable condition known as “water on the brain.” Doctors told her parents she would not be able to walk, talk, hear or see, and recommended that Isabella be put in a home for children with those disabilities.

    “We chose not to,” her mother Denise Sacharczyk said. “We were going to do whatever we had to do to give her the best quality of life.”

    Today, 18-year-old Isabella is a senior at Hampshire Regional High School. She is ranked 16th in her class with a 3.95 grade point average and aspires to become a medical researcher.

    To raise awareness and money for hydrocephalus research, Isabella and her mother are hosting a fundraising walk at Hampshire Regional High School from 10 a.m. to 1 p.m. Saturday through the nonprofit Pediatric Hydrocephalus Foundation.

    After searching for a support group, about three years ago, Isabella and Denise became involved with the organization, and now head the Massachusetts state chapter. Last year, the mother and daughter hosted their first walk at the high school. About 80 people attended and the event raised about $6,000.

    The cause of hydrocephalus can vary person to person.

    Isabella’s hydrocephalus was due to damage from E. coli meningitis and a related stroke.

    A shunt is surgically placed to drain fluid from the brain and release pressure. Isabella has two of the devices which move fluid from one part of the body to another.

    “Pretty much the shunt saves her life,” Denise said. “Without it she would die.”

    Isabella has had 23 brain surgeries due to malfunctions or complications related to the shunt, with six of those surgeries were in 2011.

    “One in three shunts don’t make it six months,” before malfunctioning, Isabella said. “So the odds aren’t great.”

    After one surgery in 2013, Isabella had to learn how to walk again.

    “She could be perfectly fine today and tomorrow she could be in the emergency room,” her mother said.

    Isabella has trouble with fine motor skills, walks with a cane and experiences headaches on a daily basis. She cannot take notes in school and her memory is not great, but she spends hours studying at home, using notes provided by her teachers.

    For exercise, Isabella rides a tricycle, though she joked that she “managed to fall off.” Her mother bought a matching one to go on rides with her daughter.

    “I don’t let my condition hold me back,” Isabella said.

    The “Funding a Cure for Hydrocephalus” walk on Saturday will feature a bounce house, music, concession stands and a raffle. Students can volunteer at the event for community service hours.

    To register or donate, visit active.com/donate/phfwalkma2016.

    Source:

    Laurie Berkner Named National Spokesperson for the Pediatric Hydrocephalus Foundation, Inc.

    June 16, 2010 by  
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    Press Release

    For Immediate Release

    Contact: Kimberly Illions
    Tuesday, June 15, 2010
    (732) 634-1283
    kim@hydrocephaluskids.org
    http://www.HydrocephalusKids.org

    Laurie Berkner Named National Spokesperson for the Pediatric Hydrocephalus Foundation, Inc.

    Children’s Musical Artist Laurie Berkner To Be The “Voice” of September’s “National Hydrocephalus Awareness Month” Public Service Announcements To Be Heard In Every State In The Country Sponsored By The PHF, Inc.

    Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. (PHF) today formally announced that children’s musical artist Laurie Berkner of The Laurie Berkner Band will serve as their Celebrity National Spokesperson for this September’s “National Hydrocephalus Awareness Month.”

    “We are thrilled to have Laurie Berkner joining us in helping to raise awareness,” stated Michael Illions, Vice President and National Director of Advocacy for PHF. “Laurie Berkner is one of the most recognizable names in the entertainment business to children and is a household name in tens of thousands of homes.”

    lberkner Laurie will serve as the voice of the Pediatric Hydrocephalus Foundation’s Public Service Announcement for September’s “National Hydrocephalus Awareness Month.” The initiative will have the Berkner recorded PSA be heard on at least one radio station in every State in the Country for the entire month of September. Contracts with radio stations in almost 75% of the States have been finalized for this endeavor.

    “I am happy to be a part of raising awareness of Hydrocephalus in the United States during September’s “National Hydrocephalus Awareness Month”, and help children like Cole Illions and so many others who are struggling with this incurable brain condition”, said Laurie Berkner.

    You can visit the Pediatric Hydrocephalus Foundation’s website for more information and to check the radio stations from around the Country that are participating in this project.

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    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.

    About Laurie Berkner

    Laurie Berkner regularly appears on Nick Jr., a television network aimed at children, in music videos played between programs and on the program Jack’s Big Music Show. Berkner has written two children’s books: Victor Vito and Freddie Vasco, based on her song “Victor Vito”, and Story of My Feelings. She has also put out a video and DVD, We Are…The Laurie Berkner Band; the DVD, has sold more than 400,000 copies since its 2006 release.