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  • TODAY: “One Day….. One Donation”: PHF September 30th Hydrocephalus Awareness Money Bomb!

    September 30, 2014 by  
    Filed under Uncategorized


    PHF September 30th Hydrocephalus Awareness Money Bomb
    “One Day….. One Donation”


    MAKE YOUR DONATION TODAY!

    Click to Enter the Hydrocephalus Awareness MONEY BOMB Donation Website!

    PHF September 30th Hydrocephalus Awareness MONEY BOMB!!!

    “ONE DAY….. ONE DONATION”

    The Pediatric Hydrocephalus Foundation (PHF), the nation’s #1 advocate for children with Hydrocephalus, needs your help Today for our 2nd Annual Hydrocephalus Awareness MONEY BOMB to raise funds for our amazing initiatives & Hydrocephalus research project funding rolling out in 2014 and beyond!

    Last year’s Money Bomb! was a huge success, raising just under $5,000.00 in 24 hours!!

    The PHF is dedicated to raising the level of awareness of this incurable brain condition, providing support to those who are diagnosed with Hydrocephalus, and most of all raising money to help fund a cure and better treatment options for our children!

    In 2009 the month of September has been named “National Hydrocephalus Awareness Month” and this year has been OUTSTANDING! The outpouring of support the PHF has received from around the country has been INCREDIBLE!

    But we need your help TODAY to make it our best month ever for fundraising.

    So we’re asking everyone to participate again, in the 2nd Annual Hydrocephalus Awareness MONEY BOMB TODAY so we can end this year’s Hydrocephalus Awareness Month with a bang, and keep the momentum going for the next few months and into 2015!

    If every supporter of the PHF who believes in our mission and wants to support the outstanding success we have had as advocates for children and families affected by Hydrocephalus contributes Today, we’ll have a record-breaking fundraising success.

    We are counting on you to contribute and push the PHF to new heights!!! Click below, and thank you for your generosity!!!

    Join us for this special On-Line Fundraising event- PHF’s Hydrocephalus Awareness MONEY BOMB!

    “ONE DAY….. ONE DONATION”

    The Pediatric Hydrocephalus Foundation is a non-profit 501 (c) (3) non-profit charitable organization. All donations are tax-deductible.

    Click to Enter the Hydrocephalus Awareness MONEY BOMB Donation Website!

    PHF In The News: Glen Ridge Woman Spreads Awareness of Pediatric Hydrocephalus

    September 20, 2014 by  
    Filed under Uncategorized

    Glen Ridge resident Colette Umar seems like a typical twenty year old. She hangs out with friends, attends school and even has a plan for after graduation. “I’ve always wanted to work with children and I’ve always liked school. I plan to study early childhood education and then work with little kids.” A stark difference between Colette and most of her peers, though, is that she has undergone fifteen brain surgeries to help control the excess cerebral spinal fluid collecting around her brain. Colette has hydrocephalus.

    According to the National Institute of Neurological Disorders and Stroke, it’s estimated that one to two out of every thousand babies is born with hydrocephalus. In infants, this condition can cause symptoms like: an unusually large head, vomiting, irritability and seizures. It’s often congenital, though it can develop at any age for a variety of reasons. The most common causes of hydrocephalus include: spina bifida, a tumor on the spinal cord or brain, certain infections and traumatic brain injuries. It can lead to neurologic issues and even death if not treated.

    Many parents learn of their child’s diagnosis while still pregnant or just after birth. Colette’s parents found out that she had hydrocephalus while she was in utero. Her first surgery, when a shunt was inserted into her brain to redirect the excess spinal fluid to a part of her body that could absorb it, took place when she was merely one day old. Her fifteenth surgery was completed when she was in the second grade. “Most of my surgeries were shunt revisions,” she explained, “which is normal for people with this disorder. Shunts aren’t perfect and they don’t last forever.” The Pediatric Hydrocephalus Foundation (PHF) website asserts that an average of 40,000 shunt operations occur each year.

    Colette explained that aside from learning delays, hydrocephalus has not interfered with her life too much. Most of her friends know about her condition and are willing to learn more. She also hasn’t had as many surgeries as some others with the condition, so she’s able to see her friends more. She added, “In more severe cases, people don’t always know how to react to the person with hydrocephalus. And if they have many surgeries, they aren’t around to build those friendships. They spend a lot of time in the hospital.”

    It’s this lack of understanding that has spurred Colette’s advocacy efforts. While in middle school, she realized that she wanted to learn more about this condition and she wanted others to know about it, too. In high school, she initiated faculty dress down days to spread awareness and then started participating in walks for the PHF. She has also raised money for PHF by making and selling jewelry and decorated flip flops. Twice, she has travelled to Washington DC with PHF to educate members of Congress and to try to secure research funds. During her last trip, she along with other NJ residents, met with staffers from Senator Booker and Senator Menendez’s offices and with a representative of Congressman Payne. Colette added “I hope that all this hard work will result in me seeing a cure for hydrocephalus in my lifetime!”

    If you would like to get involved, visit the PHF website to learn more or to donate.

    Source:

    PHF In The News: Yorktown Walk Will Raise Money For Brain Condition

    September 19, 2014 by  
    Filed under Uncategorized

    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.

    Source:

    PHF In The News: Fundraiser walk to be held Sept. 20 for pediatric ailment

    September 7, 2014 by  
    Filed under Uncategorized

    Durango city councilors were set to approve Tuesday a proclamation drafted by Christina Brown that adds hydrocephalus to the crusades, causes and campaigns for which September is recognized.

    Brown, whose son, Jaden, 4, has the condition, gained a similar proclamation last summer from Gov. John Hickenlooper. September was designated National Hydrocephalus Awareness Month by Congress in 2009.

    Hydrocephalus, found in about 1 in 500 births, is a swelling of the brain caused by the accumulation of the fluid that surrounds the brain and spinal cord.

    Brown, chairwoman of the state chapter of the Pediatric Hydrocephalus Foundation, said Tuesday that a 5-kilometer walk fundraiser for the cause is scheduled Sept. 20 in the Three Springs area.

    The 5K walk begins at 10 a.m. at the plaza, 175 Mercado St., near Mercy Regional Medical Center. Walkers can register starting at 9 a.m.

    Online registration can be done at http://www.active.com/donate/phfwalkco2014

    daler@durangoherald.com

    Source:

    PHF In The News: Spreading awareness Families band together in outreach over children’s rare conditions

    September 1, 2014 by  
    Filed under Uncategorized

    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.

    Source:

    PHF In The News: The Female Face of Hydrocephalus; ANA Patient Hailie Mussinan Selected as 2014 National “Face” of Hydrocephalus Awareness

    August 31, 2014 by  
    Filed under Uncategorized

    When you look at 4-year-old Hailie Mussinan, you see an incredibly happy child. She is a perfect example of the pediatric hydroceopalus patients we treat at ANA. In Hallie’s case, a shunt inserted by Dr. Arno Fried lets her live with a potentially life-threatening condition. Shunting, which began in the 1950′s, 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.

    For good reason, Hailie was selected as one of two children to serve as this year’s “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation (PHF) to help raise the level of awareness and education about hydrocephalus in the United States. Hailie, whose family lives in Woodbridge, will represent the girls, while 4-year-old Owen Rush of South Carolina will represent the boys. Hailie will be featured in advertisement campaigns and promotional materials for Hydrocephalus Awareness as we head towards the 6th Annual “National Hydrocephalus Awareness Month” in September. Those passionate about the cause have also created PHF Hydrocephalus Awareness Day on Capitol Hill, which took place in August.

    The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about hydrocephalus. PHF, with 34 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 State and Federal levels to push for more research and support in the fight against hydrocephalus.
    Hydrocephalus is the most common congenital defect of the brain and spine with 1 in 500 infants born with this condition. Although it can occur in adults, hydrocephalus is more common in children, especially infants, and can potentially cause damage to the brain.

    Source:

    PHF In The News: Yorktown Family Raises Awareness Of Brain Condition Afflicting Daughter

    July 26, 2014 by  
    Filed under Uncategorized

    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.

    Source: