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  • PHF In The News: HPD officers grows beards for hydrocephalus

    November 22, 2014 by  
    Filed under Uncategorized

    The Hartselle Police Department has opted to waive their no-facial-hair policy for a good cause for the second year in a row.

    Several officers are electing to participate in No Shave November to raise money for the Pediatric Hydrocephalus Foundation. This non-profit organization was chosen by the police force because Sgt. Kel Roberts has a daughter with hydrocephalus, and he and his wife Danielle helped charter an Alabama chapter of the PHF.

    Reagan Roberts, 3, has a condition that causes cerebrospinal fluid to collect around the brain and spinal cord, which was once known as “water on the brain.” The most prevalent treatment for this irreversible condition is a shunt that drains the fluid from the brain into another part of the body, usually the abdomen. Reagan has already had three brain surgeries and a shunt.

    Roberts said there is little funding for research on this condition that affects about one in every 500 births.

    “There’s not a lot out there to treat or learn about hydrocephalus,” Roberts said. “It only gets a small portion of government funding for research, which is a tiny amount compared to other, less prevalent conditions. While research for all conditions is great, we wanted to do what we could to promote hydrocephalus.”

    The Roberts family looked for a way to raise money and spread the word about the cause. Danielle is now the Chairman of the Alabama chapter of the PHF, and he is the Co-Chair. Roberts suggested the police department use their annual fundraiser to benefit the condition.

    “Our chief lets us break the facial hair policy in November if each officer in the competition raises $100,” Roberts said. “Each officer collects money, and we have a website to keep up with who is involved and how much has been raised. We accept cash or checks made out to the Pediatric Hydrocephalus Foundation. People can specify which officer they want to support or just let the officers split it equally.”

    Donations can be made to their website active.com/donate/phfshave until Nov. 30. Visitors can also see who has donated, how much money each officer has raised and the total amount raised. The officers are competing for special individual awards including The Highest Earning Beard Award, The Ultimate Beardster Award, The Grayest Beard Award and The Baby Face Beard Award.

    The 10 participating officers have raised $1,175 so far.

    Roberts said he is excited for the police force to be able to help fund hydrocephalus research.

    “We thought this fundraiser would really make it a local effort that would mean a lot to us,” Roberts said. “I’m very proud to be a part of this and we hope we can continue to do our part no matter how small it might seem. I know most people know someone with hydrocephalus, but they don’t know what it’s all about. Maybe our funds can help educate and touch the lives of people and families living with hydrocephalus.”


    PHF In The News: Hartselle police officers go ‘beard to beard’ to raise money

    November 21, 2014 by  
    Filed under Uncategorized

    HARTSELLE, AL (WAFF) — Hartselle police officers are teaming up with the Alabama Pediatric Hydrocephalus Foundation to raise money with the No Shave November Contest for a Cure.

    Each participating officer began November with a clean shave, and they will go “beard to beard” to raise the most money by Nov. 30.

    Each officer has been given a minimum goal of $100 to participate.

    At the end of November, each officer will be eligible to win an award in the following categories:

    The Highest Earning Beard Award
    The Ultimate Beardster Award
    The Grayest Beard Award
    The Baby Face Beard Award

    You can click here to see the participating officers and find out how to donate to the cause. You can also find out more about the Pediatric Hydrocephalus Foundation and what their mission is.


    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”


    Click to Enter the Hydrocephalus Awareness MONEY BOMB Donation Website!

    PHF September 30th Hydrocephalus Awareness MONEY BOMB!!!


    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!


    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.


    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.


    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



    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.