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  • PHF In The News: Event Notice: Manchester PBA Golf Outing May 5

    April 6, 2014 by  
    Filed under Uncategorized

    MANCHESTER-Manchester PBA 246 is inviting community members and businesses to help support its Fifth Annual Golf Outing, scheduled for Monday, May 5 at Pine Barrens Golf Club in Jackson.

    Each year, Manchester PBA 246 selects a charitable cause to support with funds raised by the Golf Outing. The primary beneficiary of the 2014 event is the Pediatric Hydrocephalus Foundation, a nonprofit organization committed to raising awareness and urging greater research of the brain condition which affects more than one million Americans.

    “All of the causes Manchester PBA 246 has supported throughout the years have been well deserving and we’re proud to help the Pediatric Hydrocephalus Foundation this year,” said Manchester PBA 246 President Paul Bachovchin.

    Manchester PBA 246 Golf Outings serve as the organization’s cornerstone fundraising effort and have raised nearly $20,000 each year for charitable causes since 2010.
    The proceeds are split between a primary beneficiary—in years past Children’s Specialized Hospital and Parents of Autistic Children received donations—and the other causes supported by Manchester PBA 246 throughout the year.

    “I’m proud of the fact that our annual golf outing is looked upon by other organizations as a well run and successful event,” Officer Bachovchin said.

    Many levels of sponsorship opportunities are available and range from $25 to $3,000. Registration forms and a detailed list of sponsorship levels are available through the Manchester Township Police Facebook page, www.Facebook.com/ManchesterPolice.

    For more information or to become a sponsor, contact Officer Bachovchin at 732-657-2009, Ext. 6356 or PBachovchin@Manchestertwp.com.

    Pine Barrens Golf Club is located at 540 South Hope Chapel Road, Jackson, NJ 08725.


    In Support of S. 2007, the Protect Act

    March 28, 2014 by  
    Filed under Uncategorized

    Patients and their caregivers are using health information software on their smartphones and tablets to manage their health and wellness, particularly among those with rare or less common conditions, those who are chronically ill, and those with service-connected conditions.

    Use of these technologies has allowed patients and their caregivers to easily integrate disease management activities into their daily lives.

    Recent actions to regulate mobile health apps and other health IT software have created confusion in the market about what technologies may be regulated next. We are concerned that this might inhibit development of these products or dramatically increase their price to consumers.

    S.2007, the PROTECT Act, would clarify the regulation of medical device and health information technology, an important first step in updating how new health information systems and software are regulated to help ensure that products are safe and that patients and caregivers have access to these innovative technologies.

    If you would like to add your organization to our PROTECT Act endorsement letter, please contact mike@hydrocephaluskids.org by Wednesday, April 9.

    Please Download/Print the Letter in Support of S.2007

    Rare Disease Report Interview w/ PHF’s Michael Illions

    March 26, 2014 by  
    Filed under Uncategorized

    Rare Disease Report:

    The Pediatric Hydrocephalus Foundation (PHF) was established by Kim and Michael Illions to raise awareness of this brain condition and provide support to the families living with hydrocephalus.

    Combining both of those activities, the foundation will be in Washington this August to educate legislators about hydrocephalus and the foundation will provide assistance to all families wanting to attend this annual event.

    PHF is also heavily involved in the community and has multiple fundraisers throughout the year, including ones at Detroit Tiger games.

    Hydrocephalus — also referred to as water on the brain — is a lifelong condition in which persons have excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. Current treatment is usually to surgically insert a shunt that drains the excess CSF to other areas of the body (usually the abdominal region). During a person’s lifetime, multiple surgeries are usually necessary to replace or fix the shunts.

    In this exclusive interview with Rare Disease Report, co-founder of PHF, Michael Illiions, describes the foundation and the upcoming meeting they have in Washington this summer.

    Registration: PHF March 20th Conference Call w/ Author Stefania Moffett

    March 4, 2014 by  
    Filed under Uncategorized

    PHF Conference Call

    Join us on March 20th @ 7:30pm EST as Canadian Author Stefania Moffatt discusses her Hydrocephalus-themed book “Headstrong” and the 10 year old girl who is the inspiration for the book.

    About Headstrong

    Headstrong is about a fun-loving girl who likes to make people laugh. When Ellie was in her mommy’s tummy the doctors discovered a cyst on her brain, which turned out to be something called hydrocephalus. The book documents Ellie’s operations soon after birth to her life today as a “regular” kid.

    Headstrong is a great book for kids of all ages as it demonstrates how you can overcome a challenge at any age and to accept and understand what makes people unique.

    The book can also prepare kids for doctor and hospital visits.

    Q & A session will follow.

    The call is FREE. Please register to reserve your spot for this very special Conference Call.

    Your Name (required)

    Your Email (required)

    Your State (required)

    Don’t Dis My Abilities

    February 11, 2014 by  
    Filed under Uncategorized

    My name is Nicole and I am 24. I have Spina Bifida… more specifically, Myelomeningocele with Hydrocephalus.

    When I was growing up, I didn’t really have that many friends that I could relate to or who could relate to me. I felt that it was because of my disability. My parents and my older brother were the only people who I could turn to for guidance and advice on things, but they really did not understand what I was going through with my disability or just life in general.

    I found it very difficult to succeed in school, both because I had a learning disability and because I was in and out of school due to check-ups or having yet another surgery. This made it hard to make friends. In addition, when I would have a complication from my Spina Bifida they would make fun of me.

    When I was younger, I felt that other children either didn’t like me or did not have the same interests because I was in a wheelchair. I felt that people who saw my wheelchair automatically thought I could not do anything in life whatsoever… that I would just be in a wheelchair and have someone take care of me for the rest of my life. Granted I do have the help of my parents, but it really is not 24/7. As I am getting older I am learning that people just do not have the knowledge about Spina Bifida or are misinformed. All they see is a wheelchair. But it is more than just a chair! We are strong human beings because of what we have had to go through both medically and socially.

    Over the past year or two I have really embraced my abilities and have tried to figure out ways I can help others learn more about Spina Bifida. I have found great support groups via Facebook. Hydrocephaluskids.org is also a great outlet for those of us who have Spina Bifida because of the sense of community. We all know what the other person is going through, and we can lend a shoulder to lean on and ears to listen if needed. It’s a great place to make friends with individuals who share a common interest. We need that community to provide a safe social outlet!

    PHF In The News: Chesnee boy with brain condition selected for awareness campaign

    January 26, 2014 by  
    Filed under Uncategorized

    Before his first birthday, Owen Rush had undergone five surgeries for an incurable brain condition.

    The 4-year-old Chesnee boy will raise awareness of the condition he’s battled since birth in a national campaign.

    Owen will serve as the 2014 “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation. Owen will represent male children, while a 4-year-old New Jersey child will represent girls.

    He will be featured in ad campaigns, promotional materials and literature for National Hydrocephalus Awareness Month in September. He and his family also will travel to Washington, D.C. for “National Hydrocephalus Awareness Day on Capitol Hill” in August.

    Hydrocephalus affects hundreds of thousands of Americans of all ages, according to the Hydrocephalus Association. The condition occurs when excess cerebrospinal fluid surrounds the brain and spinal cord. The excess fluid can harm brain tissue and can be fatal. Hydrocephalus occurs at birth or may develop later in life.

    Owen’s parents, James and Stacie Rush, learned Owen, their second child, had the condition when Stacie was 20 weeks pregnant.

    “We didn’t know anything about hydrocephalus,” James said.

    The couple was faced with many unknowns and asked many questions. Why did Owen have it? How did he get it? What would happen after his birth?

    Stacie said they were uncertain what potential challenges awaited their son.

    Abortion was not an option.

    “We just continued with the pregnancy,” Stacie said.

    She cried when fears set in. She wondered if she had unknowingly passed on genes that caused Owen’s hydrocephalus. Testing revealed she had not.

    Owen — their “miracle” — was born Dec. 17, 2009. After five days in a neonatal intensive care unit, Owen spent a couple of weeks at home before his first shunt was implanted.

    The shunt malfunctioned on Mother’s Day 2010, then again on Father’s Day, requiring emergency surgeries. A different shunt was implanted in another area of Owen’s brain later that year. Surgery to repair his skull was performed Thanksgiving.

    Fortunately, there have been no more emergency complications with Owen’s shunt. But he began having seizures around 10 months old – as many as 40 a day.

    Surgeons implanted a medical device this past August in the hopes to help treat Owen’s epilepsy and improve his quality of life. He continues to have about 15 seizures each day.

    “Though we’ve not seen any change in his seizures, he is more cognitively aware,” Stacie said.

    Owen cannot tell you if he’s hungry, cold or needs his diaper changed. Yet, he happily runs to give you a hug and announce he loves you. There’s almost always a smile on his face, even when he’s not well.

    Owen may cry when nurses draw his blood, then he wants to hug them.

    “He’s so loving,” Stacie said.

    And at the emergency room, the parents are told that Owen appears fine. James said they explain that’s just the way Owen is—he gets sick and turns around for a hug.

    Owen’s grandfather, Charlie Drake, called him a “trooper.”

    Stacie said Owen isn’t saddened about his limitations.

    “He has no conception of fear,” she said.

    “He’s my bionic boy,” she said with a smile as Owen walked through the living room.

    Stacie took the photo of Owen that was randomly selected by the Pediatric Hydrocephalus Foundation.

    Owen was in the backyard wearing his big brother, Drake’s hat, when she snapped the shot with her cellphone. Owen also has a little sister named Charlee-Kate who looks out for her big brother and warns her parents when he’s having a seizure.

    Stacie, a respiratory therapist, works weekends, while James, a deputy with the Spartanburg County Sheriff’s Office, works nights.

    A typical day starts with a flurry of activity – assembling book bags and deciding who will take which kids where.

    Drake attends Chesnee Elementary School, while Owen is at McCarthy Teszler School.

    Owen has about 10 doctors. The family is often rushing to appointments and therapy sessions. When she has spare time, Stacie prepares for the next day.

    The couple has learned to take one day at a time and not take small things for granted.

    James said they wish hydrocephalus received more funding that would advance treatments.

    Owen could die if his shunt malfunctions.

    Michael Illions, vice president of the Pediatric Hydrocephalus Foundation (PHF), has a son, Cole, who was the inspiration for the foundation. Illions said in a phone interview that Cole, 8, has had 13 surgeries related to hydrocephalus. Hydrocephalus and the surgeries to treat it have left Cole unable to speak and caused other developmental delays.

    “It’s been heartbreaking and difficult,” Illions said.

    Cole, he said, excels in math, electronics and reads. He’s able to communicate by typing his thoughts.

    Illions said a lack of advancements in treatment has left many affected individuals unable to lead full, productive lives.

    Illions said that although someone with hydrocephalus may not appear sick, they have a potentially fatal condition.

    He said hydrocephalus has not received the same level of attention as other conditions.

    Hydrocephalus is often treated with a shunt system that’s surgically inserted to divert the flow of excess cerebrospinal fluid to another area of the body where it’s absorbed, according to the National Institute of Neurological Disorders and Stroke.

    Illions and others want to see a cure.

    “While the shunt itself is a life-saving device, it has its own problems,” Illions said.

    He said shunts are subject to failure and there’s a window of time to correct that failure.

    “It’s like a ticking time bomb when the shunt fails,” he said.

    Hydrocephalus affects an estimated one to two of every 1,000 babies born in the United States.

    PHF is an all-volunteer nonprofit that provides education and increases awareness of hydrocephalus with 34 state chapters. In addition to providing support to families, the organization also advocates for those with the incurable brain condition and raises funds for research in hopes there will be a cure. According to numbers provided by PHF, it has awarded $225,000 to hospitals, neuroscience institutes and medical research centers for research and education since 2010.

    Illions said the face for PHF’s awareness campaign is randomly selected.

    The foundation received 160 entries from around the world, including Africa, the United Kingdom, Pakistan, India, Australia and the Philippines. About 40 states also were represented.

    Illions expects a “huge turnout” at this year’s annual retreat in Washington, D.C. He said more than 100 people have registered so far.

    Owen’s photograph and his story are featured on the foundation’s website at www.hydrocephaluskids.org.

    Owen has inspired the Rush family more than they thought imaginable.

    “He’s definitely taught us patience and so much,” Stacie said.

    James said they have more gratitude for everyday things.

    “Simple things for us are accomplishments for him,” James said.

    What some consider a big deal, is not so big after all, James said.

    Stacie’s mother, Sandra, said God has helped the family through it all.

    “There are strengths that you don’t know you’ve got,” Sandra said.

    “Exactly — until you’re faced with it,” Stacie added.