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  • 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.

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    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:

    PHF in The News: Fairfield Woman Inspired To Run Half-Marathon By Friend’s Daughter

    June 22, 2014 by  
    Filed under Uncategorized

    FAIRFIELD, Conn. – For the past four months, Sally Fulcher of Fairfield has been training to run her first half-marathon this Sunday. But her goal goes beyond tackling the 13.1-mile course: She is seeking to raise awareness for an incurable disease affecting her friend’s young daughter.

    For Cindy Shanley, the past year has been filled with doctor’s visits, hospital stays and a constant awareness of the brain disorder hydrocephalus, which afflicts her 20-month-old daughter, Reagan.

    The painful condition causes an abnormal amount of spinal fluid to build, widening spaces in the brain. It can cause increased pressure inside the skull and progressive enlargement of the head as well as other problems. It can be fatal.

    “There is no cure for this,” Shanley said. The only treatment is surgical, to release the fluid built up in the brain. Even at her young age, Reagan, she said, has already had two surgeries to reduce the amount of fluid in her brain.

    Some children are born with hydrocephalus and others develop it. The condition is most common in infants and affects nearly one in every 500 births. Reagan seems to have developed the problem.

    “What Sally is doing is to raise awareness.” Shanley said. She and her family are grateful for the time and effort that Fulcher is putting in to help their cause.

    Always a runner, Fulcher said she has not done any long-distance runs since having children and has never run far as a half-marathon.

    But having the motivation to raise money for awareness and research for her friend’s second child pushed her into running the Stratton Faxon Fairfield Half, which benefits the Pediatric Hydrocephalus Foundation.

    “I knew this was a great cause,” Fulcher said. Before Reagan was diagnosed, she said she had no idea that the condition even existed.

    “This is the longest I’ve ever run,” Fulcher said. “And it’s a pretty hilly course.”

    But she’s hoping the weather will be on her side Sunday and won’t be too hot as she hits the course.

    So far, Fulcher’s donation page has raised over $4,800, nearly double her initial goal. Donations can still be made online.

    Source:

    PHF In The News: Southport runner running for friend’s child

    June 11, 2014 by  
    Filed under Uncategorized

    More than 4,000 runners are expected to participate in the 34th Stratton Faxon Fairfield half marathon on June 22 and there are probably that many reasons why they do it.

    Some of the top runners, like the Kenyans, run for the prize money while others do it for more personal aspirations.

    Southport resident Sally Fulcher, who will be taking part in her first half marathon in two weeks, falls into the latter category.

    She is running the Fairfield race in honor of her friend Cindy Shanley’s 20-month-old daughter Reagan, who has an incurable brain condition known as Hydrocephalus.

    “I decided to run the Stratton Faxon Fairfield half to raise some money for a wonderful cause very close to my heart,” Fulcher said. “When Reagan was first diagnosed with this disease, I remember thinking I’d never even heard of it, which is part of the problem, and I hope to change that.”

    Fulcher has set up a website for friends and family to help support her mission at www.active.com/donate/runsallyrun and already has raised more than $2,000.

    Occurring in approximately one of every 500 births, Hydrocephalus is a condition in which excessive cerebral spinal fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues.

    Since there hasn’t been a lot of advancements in treatment, many affected with the disease are unable to lead productive lives.

    Hydrocephalus is the leading cause for pediatric brain surgery in the United States and can be fatal if left untreated.

    Fulcher has done short races for years and ran some 5K and 10K events when she lived in England.

    However, her last official race was the JP Morgan Chase Challenge four years ago before she had kids.

    Including the 5K race (June 21 at 8:15 a.m.) , which generally attracts in excess of 1,000 runners, more than 5,000 people will hit Jennings Beach for one of the top half marathons in New England.

    The half marathon will begin 15 minutes earlier this year with an 8:15 a.m. start.

    Kenyans took the top-three spots last year led by Eric Chirchir, who finished with a winning time of 1:05.58, a pace of just over five minutes per mile.

    Source:

    PHF In The News: Hamilton woman takes on Devilman Duathlon to raise money, awareness for rare brain disease

    June 2, 2014 by  
    Filed under Uncategorized

    HAMILTON – How far would you go to help someone you love? For Katie Gaven, the answer was 26 miles.

    The Hamilton resident competed in the grueling New Jersey Devilman Duathlon — which calls for contestants to perform a 6-mile run on top of a 20-mile bike ride — in Cumberland County earlier this month in order to raise money and awareness for the rare brain disease affecting her 21-year-old cousin, Adrienne D’Oria.

    “The race wasn’t a fundraiser for anything in particular, so I was thinking of how I could fundraise for something, and I thought of my cousin,” Gaven said. “Her disability is one that goes under the radar a lot, so I just felt like I needed to make people more aware.”

    D’Oria is afflicted with hydrocephalus, a condition in which excessive fluid gathers in the brain, placing a potentially damaging amount of pressure on brain cells. Affecting about one of every 500 births — and about 1 million Americans — the disease has no cure and, if left untreated, can be fatal. Often those suffering from it are limited in the tasks they can perform.

    The condition is so relatively unknown that Gaven, an occupational therapist who works with people suffering from a range of disabilities, said even many in her field are unfamiliar with it.

    “I raised a lot of the money through my school, and a lot of people participated in that and asked what this disease was,” she said. “My aunt just kept saying ‘That’s so great. That’s the whole point of doing these fundraisers — to make people more aware of this condition.’”

    Gaven spoke about the number of trials her cousin had already been through in 21 years. Born with the condition, she was fitted with a device inside her head that keeps track of her condition.

    If a test indicates something is wrong with that system, or once she has grown and needs the machine to be refitted, she must undergo intensive operations where part of her skull is cut open in order for doctors to fix or replace the device.

    Gaven’s fundraising ventures also helped bring in $1,000 to help find a cure, she said.

    “What inspired me, too, is that she’s had over 50 brain surgeries and procedures all together, and she will still go out and run a mile,” Gaven said. “And to me, that’s just unbelievable and amazing because sometimes I struggle with getting up in the morning and running, and she’s gone through all this and still does it.”

    D’Oria’s perseverance and determination inspired and helped Gaven throughout the race, which will be her last after many years of participating in similar events, she said. The thoughts were especially helpful for Gaven in moments of weakness during the race, she said.

    “When you’re getting tired and fatigued and want to give up, I’d think of her and it was motivation to keep going,” she said. “She’s definitely gone through a lot for someone who’s only 21. She inspires a lot of people, and I don’t think she even realizes that.”

    Source:

    PHF In The News: Family beats odds on child’s diagnosis

    May 21, 2014 by  
    Filed under Uncategorized

    Danielle & Kel Roberts are the PHF State Chapter Directors of Alabama

    HARTSELLE, AL (WAFF) -

    Young mother of two Danielle Roberts told us, “I was 16 weeks pregnant when they told us she had hydrocephalus.”

    Her husband Kel Roberts said they were shocked to learn the daughter Danielle was carrying had water on her brain.

    “There was so much damage and so little brain that was left that she really wouldn’t have a chance, and we were asked to make a choice at that point whether or not to ‘carry on,” he said.

    And carry on they did. Kel said there was a lot of prayer and support.

    “If we back track to the very beginning, there was not a whole lot of hope for anything. We’re three years more than what they really gave us,” he said.

    Reagan is now a sweet, coy three year old with a shunt. Her mom described how it works.

    “This part goes in the brain and it drains the pressurized fluids. Once that fills up, it will drain out and it drains out into about her abdomen,” said Danielle.

    She says the body absorbs the fluid. This is basically the same technology available in the 70′s.

    There are some developmental delays with Reagan.

    “The biggest delay that she’s got would be mobility,” said Danielle.

    Reagan’s grandmother has a nickname for this precious bundle. She calls her ‘Amazing Grace,’ and it’s easy to see why.

    He dad says she’s making great progress.

    “She is not limited in any way. She gets around on her own. She is more than capable and more than willing and strong enough to do and be what ever she wants to be,” said Kel.

    She recently suffered a seizure, so her parents took her to her neurologist. Current test results show remarkable improvements. “She is super intelligent. I mean it just blows us away every day. And we treat every day as a miracle”, adds Kel.

    To learn more about hydrocephalus:

    Active.com
    Hydrocephalus kids blog
    AL Pediatric Hydrocephalus Foundation
    National Institute of Health

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