• Home
  • Contact Us
  • How Can I Help?
  • Resources
  • Features
  • About PHF
  • Caucus
  • In The Name Of Kindness: Cranbury Idol Fund-Raises For Pediatric Hydrocephalus

    June 12, 2015 by  
    Filed under Uncategorized

    CRANBURY – As the auditorium went dark Friday night and the excited din of audience members descended into silence, the Cranbury School’s Kindness Club got the third annual Cranbury Idol rolling and shone a spotlight on pediatric Hydrocephalus.

    Several hundred people came out to offer support and serve as judges for the eight contestants, all of whom are students at the school.

    Opening the show, Raegan Oake sang “Fly Before You Fall,” followed by “Are You Gonna Go My Way,” which was sung by Andy Ciardella.

    Next in the lineup was Christy Phillips, who sang “Killing Me Softly,” and Isabella Ames, who performed “Love Somebody,” accompanying herself on guitar.

    Julia Patella gave the crowd a taste of “Explosions,” while a rendition of “I’m Yours” was sung by Sonal Mallick.

    Rounding out the program was Bay Daily, with a performance of “Remember the Name,” and Sara Reilly, who sang “Let It Go.”

    A suggested $5 donation was collected at the door, with all of the proceeds going to support the work of the Pediatric Hydrocephalus Foundation.

    According to the foundation, Hydrocephalus is a lifelong condition, which affects more than one million Americans, from newborns to seniors.

    The primary characteristic is excessive accumulation of fluid in the brain, with the excess fluid resulting in an abnormal widening of spaces in the brain called ventricles.

    This widening creates potentially harmful pressure on the tissues of the brain, according to the foundation.

    Hydrocephalus is most often treated by surgically inserting a shunt system, which diverts the excess fluid to another area of the body, where it can be absorbed through the normal circulatory process.

    Nationwide, an average of 40,000 shunt operations are performed each year and Americans spend more than $1 billion annually to treat this condition, according to the foundation.

    Currently, there is no known cure.

    According to Chief School Administrator Dr. Susan Genco, Cranbury Idol was conceived in 2013 by former Cranbury School student Amir Moon, as a way to raise money for the Children’s Hospital of Philadelphia.

    In keeping with the theme of giving, the recipient of last year’s Idol proceeds was One Simple Wish, a non-profit organization that enables individuals to grant wishes to foster children.

    Twelve-year-old Kylee Tucholski had a very personal reason for nominating PHF as this year’s Idol charity.

    “My little brother Nicholas was born with Hydrocephalus and he was my inspiration to go above and beyond to help find a cure for Hydrocephalus,” Kylee said. “I wanted to raise awareness so I decided to use the Pediatric Hydrocephalus Foundation to work for my brother and other kids with Hydrocephalus.”

    The lights came up as the last note of round one finished ringing, signaling the arrival of intermission.

    Kindness Club members moved throughout the audience, distributing iPads and inviting people to cast their votes for their top three favorites before making their way to the cafeteria, where refreshments and baked goods awaited.

    For Isabel Kinney, 14, and her friend Aevyn Peacock, 13, Cranbury Idol was a great way to spend Friday night.

    “We love the show,” Isabel said. “We like listening to all the performers and it’s for a really good cause.”

    Aevyn said that both she and Isabel are friends with all the contestants and that the show helped them see them in a whole new light.

    “It’s fun seeing our friends perform like that because we’ve never really seen them that way,” she said.

    Both girls said that they were surprised by how difficult it was to narrow the field and vote for their favorites.

    Round two saw Julia Patella, Isabella Ames and Bay Daily vying for the title of Cranbury Idol, as they each performed a new song for the audience.

    As the performances wrapped, Kindness Club members once again made their way around the room with iPads, recording votes from audience members.

    With the votes in and tallied, it was time for the big reveal.

    To thunderous applause from the audience, Julia Patella was named second runner-up, Bay Daily was named first runner-up and Isabella Ames was announced as the new Cranbury Idol.

    “I really wanted this and I was really determined to get it,” Isabella, 11, said, as she flashed a smile. “I feel amazing!”

    According to Dr. Genco, a donation in the names of all of the winners will be made to the foundation.

    While Isabella, Bay and Julia may have had a good night, they weren’t the only ones.

    “This was a big deal for us,” PHF Vice President and Director of Advocacy Michael Illions, said. “You can see, the turnout was unbelievable, everybody was really into it.”

    Acknowledging that Hydrocephalus is not a household name in the same way that breast cancer or Alzheimer’s disease are, PHF Board Member Mary Ann D’Oria said that educating the community is vital to making headway in research.

    “Most people have not heard of it and it’s a good thing to get the cause out there,” she said. “The more people become aware, then the more funding we can get.”

    Mr. Illions said that he and Ms. D’Oria each have a child with Hydrocephalus and that they have had a total of 70 brain surgeries between them.

    When a shunt malfunctions, fixing it always involves brain surgery, Ms. D’Oria said.

    “Our children always have to have their head cut open, (and) each time there’s a risk,” she said.

    According to Dr. Genco, the Kindness Club began four years ago and consists of 20 students in grades six through eight.

    It takes its inspiration from the ancient Greek storyteller Aesop’s quotation, “No act of kindness, no matter how small, is ever wasted.”

    The Pediatric Hydrocephalus Foundation is a non-profit 501 (c)(3) charitable organization, according to the organization’s website. It is located at 66 Caroline St. in Woodbridge, N.J.

    More information on Hydrocephalus can be found at www.hydrocephaluskids.org.

    Source:

    PHF In The News: Orange County mom joins Pediatric Hydrocephalus Foundation

    February 8, 2015 by  
    Filed under Uncategorized

    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.

    Source:

    12-Year-Old Madelyn Edgecomb From California Selected as 2015 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

    January 26, 2015 by  
    Filed under Uncategorized

    MEET MADELYN EDGECOMB

    12-Year-Old Madelyn Edgecomb From California Selected as 2015
    National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

    Madelyn was diagnosed with congenital hydrocephalus due to aqueductal stenosis in utero at 21 weeks. She was born at 35 weeks and had first shunt placed at 1 day old. She has had 29 revisions,1 successful ETV and 4 chiari malformation surgeries. She currently is shunted along with the ETV.

    Her neurosurgeon is Dr. Peter Sun of UCSF Benioff Children’s Hospital Oakland, (formally Children’s Hospital Oakland), who is amazing! Her shuntaversary is tomorrow and it will mark 1 year since her last revision! Madelyn loves to listen to music,reading, school,and making crafts. Madelyn loves her family and friends.

    We are ecstatic to have Madelyn to be chosen as the female representative.Thank you to everyone for all the support over the years. I want to thank all the families of children who have hydrocephalus, for their continuous support.

    And, the state chapter directors and board members for their efforts. And Mike and Kim Illions for their continuous dedication to our cause.

    4-Year-Old Wyatt Whitworth From Ohio Selected as 2015 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

    January 26, 2015 by  
    Filed under Uncategorized

    MEET WYATT WHITWORTH

    4-Year-Old Wyatt Whitworth From Ohio Selected as 2015
    National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

    Wyatt was born three months premature on Dec. 21st 2010, and weighed only 2 lbs 8 oz. I , his mother, contracted E Coli which caused me to go into preterm labor. Because I lived in a remote area, I was jetted to Boise’s hospital that had a NICU.

    Wyatt was born the next day. Due to his severe prematurity, he suffered a right grade 4 intracerebral hemorrhage, and a left grade 3 hemorrhage. He was also septic , on multiple IV antibiotics, and on a ventilator.

    I didn’t find out until the next day that Wyatt had the brain bleeds and was told he would probably not make it, but if he did, he would have moderately significant cerebral palsy, severe brain damage and that a normal outcome was not possible for him. The prognostic factors included clot size,early development of hydrocephalus and the severity if the prematurity.

    Wyatt had a CSF reservoir implanted for serial taps to help manage his progressing hydrocephalus at two weeks of age.
    A month later, a dye test was done to determine if there was a blockage in the subarachnoid space and what could be done to manage his hydrocephalus once discharged. The test showed that Wyatt had obstructive hydrocephalus.

    Wyatt’s neurosurgeon , Dr. Bruce Cherney, felt the primary option was a ventriculoperitoneal shunt, though an alternative option would be Endoscopic Third Ventriculostomy “ETV”.

    The ETV’s results were poor in his age group, with only a 15% success rate. But if it was successful, the failure rate was very low compared to a shunts.

    I decided to try the ETV and it was a success for Wyatt! Praise The Lord!

    As of today, Wyatt has not had any complications associated with the ETV and has not had one seizure ever (even though he was at high risk for them)! He has yearly MRI’s done to check his hydrocephalus, has mild cerebral palsy, wears AFO’s (braces) and started walking in October 2013, has had multiple eye surgeries, he goes to a special needs preschool (which he loves), receives private pediatric Physical and occupational therapy weekly,enjoys playing basketball, going to church, dancing, being around people and spending time with his family.

    After everything Wyatt has gone through and overcome in his short life, I believe he will be the perfect representative to bring awareness to the PHF.

    I thank and owe it all to God who made Wyatt who he is today and look forward to see what the future has in store for his life.

    PHF In The News: Woodbridge 5-year-old inspires against all odds

    December 30, 2014 by  
    Filed under Uncategorized

    Hailie Mussinan, of Woodbridge, is just 5, and she already has had a staggering seven surgeries.

    An MRI on Oct. 2, 2012, revealed Hailie had a brain tumor that required immediate surgery. At St. Peter’s University Hospital, Hailie’s parents met with Dr. Arno Fried of Advanced Neurosurgery Associates (ANA).

    “(Dr. Fried and his team’s) demeanor and knowledge were extraordinary. Immediately it was like a weight lifting off of us,” said Melody Mussinan, Hailie’s mother. “They couldn’t initially tell us anything — what kind of tumor, whether she was going to live. As parents, we were petrified waiting to find out what was happening to our child.”

    Hailie was diagnosed with a juvenile pilocytic astrocytoma (JPA), a rare childhood brain tumor, the accumulation of cerebrospinal fluid (CSF) in the brain that can cause enlargement of the head and, in some instances, brain damage.

    “When Dr. Fried did the craniotomy, he told me that the skin of her skull was so thin from the pressure of such a large tumor that he actually started seeing the tumor before he cut into it,” Melody Mussinan said, adding that the tumor was described as the size of a golf ball, surrounded by a softball-sized cyst.

    “You can imagine that the pain inside her head. Hailie was always the quiet kid who sat on the steps with Mom and Dad and watched her sisters play in the yard. We always just thought that was her personality.”

    Before her initial MRI, Hailie was said to be frequently vomiting and coming down with headaches.

    “I never left Hailie’s side,” her mother said. “I never stepped foot out of her hospital room. My family and friends were helping around the clock to care for Hailie’s three sisters so that my husband could work our small family business and come to the hospital. The doctors at ANA and nurses in the pediatric ICU literally become my family. They were who I cried to.”

    Hailie needed an external draining device (EDD) and a craniotomy, followed by a shunt, which entails the “placement of a tube (the shunt) in one of the brain’s ventricles or into the space of fluid in the spine in order for the spinal fluid to be safely absorbed.” Just days before being discharged, Hailie went into a seizure simultaneously as her shunt failed. Hailie was given a high dose of antibiotics as well as EDD and shunt replacements.

    Hailie was discharged on Oct. 31, 2012. In 22 days, she had accumulated five surgeries.

    “For such a little girl, my husband and I are enamored by her strength,” her mother said.

    In the summer of 2013, Hailie underwent a shunt incision revision under pediatric plastic surgeon Dr. Frank Ciminello. This past October, Hailie underwent a “double eye procedure for problems caused by her hydrocephalus.”

    “Besides (her visits every six months to) Dr. Fried, Hailie … gets an MRI with IV sedation every six months to make sure there is no tumor regrowth and to check that the shunt is functioning properly,” her mother said.

    Pediatric Hydrocephalus Foundation (PHF) selected Halie to be one of two children to serve as 2014 Face of Hydrocephalus Awareness to help spread awareness across the United States for the condition.

    “There’s no way to say thank you. Every time I see Dr. Fried and say that, he answers with a smile and ‘this is my job,’ ” Melody said. “But he and the other doctors I’ve seen at ANA are amazing. They don’t have to do their job with such compassion. They care. Hailie is more outgoing. She runs and laughs alongside her sisters while we watch. To see that is a feeling you just can’t describe.”

    Andrew Sutton is an editorial intern with the Courier News, Home News Tribune and MyCentralJersey.com

    Source:

    2015: National Ambassadors of Hydrocephalus Awareness

    December 20, 2014 by  
    Filed under Uncategorized



    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