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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:

    2016: National Ambassadors of Hydrocephalus Awareness

    December 13, 2015 by  
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    2016


    We are looking for one male and one female to serve as our National Ambassadors for Hydrocephalus Awareness for our 2016 National Hydrocephalus Awareness Campaign, with marketing and promotional materials all through the year ending September 2016 with National Hydrocephalus Awareness Month.

    We will randomly select ONE male and female from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

    The 2 winners will be awarded a 2 NIGHT STAY @ the Crystal City Embassy Suites in Washington DC during our 6th Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/18 & 8/19 in 2015, (travel not included).

    To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

    Contest ends 12/31/2015 & Winners announced on 1/2/2016
    * Email your picture to mike@hydrocephaluskids.org
    * Previous winners are not eligible.
    * PHF Board Members & State Chapter Directors ARE eligible to participate.
    * By submitting a photo, you agree that the picture may be used in promoting this contest, promotional materials for the PHF, and other PHF outreach campaigns.

    Check out the picture galleries of everyone nominated:

    The Boys
    The Girls

    2015: National Ambassadors of Hydrocephalus Awareness

    December 20, 2014 by  
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    We are looking for one male and one female to serve as our National Ambassadors for Hydrocephalus Awareness for our 2015 National Hydrocephalus Awareness Campaign, with marketing and promotional materials all through the year ending September 2015 with National Hydrocephalus Awareness Month.

    We will randomly select ONE male and female from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

    The 2 winners will be awarded $250.00 donations in their name to a 2015 Hydrocephalus Research Project & a 2 NIGHT STAY @ the Crystal City Embassy Suites in Washington DC during our 5th Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/20 & 8/21 in 2015, (travel not included).

    To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

    Contest ends 12/31/2014 & Winners announced on 1/2/2015
    * Email your picture to mike@hydrocephaluskids.org
    * Previous winners are not eligible.
    * PHF Board Members & State Chapter Directors ARE eligible to participate.
    * By submitting a photo, you agree that the picture may be used in promoting this contest, promotional materials for the PHF, and other PHF outreach campaigns.

    Check out the picture galleries of everyone nominated:

    The Boys
    The Girls

    2014: Is Your Child the Face of National Hydrocephalus Awareness?

    November 29, 2013 by  
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    We are looking for one male and one female ‘Face of Hydrocephalus’ to serve as our National Spokesperson for our 2014 National Hydrocephalus Awareness Campaign, with marketing and promotional materials all through the year ending September 2014 with National Hydrocephalus Awareness Month.

    We will randomly select ONE male and female from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

    The 2 winners will be awarded $250.00 donations in their name to a 2014 Hydrocephalus Research Project & a 2 NIGHT STAY @ the Embassy Suites in Washington DC during our 4th Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/21 & 8/22 in 2014, (travel not included).

    To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

    Contest ends 12/31/2013 & Winners announced on 1/2/2014
    * Email your picture to mike@hydrocephaluskids.org
    * Previous winners are not eligible.
    * PHF Board Members & State Chapter Directors ARE eligible to participate.
    * By submitting a photo, you agree that the picture may be used in promoting this contest, promotional materials for the PHF, and other PHF outreach campaigns.

    Check out the picture galleries of everyone nominated:

    The Boys
    The Girls

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