As we celebrate the beginning of a New Year, we also celebrate the Birthday of the Pediatric Hydrocephalus Foundation.

Four years ago on January 9th, our dream became a reality. The Pediatric Hydrocephalus Foundation, Inc. was officially “open for business.”

Thanks to your generous and continued support the PHF celebrated many successes and accomplishments in the year 2012.

We started off 2012 by launching a new initiative called PHF “Families First for Hydrocephalus.” This program introduced the PHF into hospitals around the Country and to families dealing with Hydrocephalus.

The PHF returned to Our Nation’s Capital in August for the 2nd Annual PHF Hydrocephalus Awareness Day on Capitol Hill. With over 70 attendees, representing 25 families and 14 States, the PHF met with the offices of over 40 Members of Congress to advocate, educate & raise awareness.

By the end of the day, it looked like everyone on Capitol Hill was wearing the PHF’s signature Hydrocephalus Awareness solid Light Blue bracelet or lapel pin!!

For September’s National Hydrocephalus Awareness Month, the PHF introduced “Hydrocephalus Sibling Appreciation Day”, Siblings from 10 families were randomly chosen and were awarded a Family Night at the Movies, courtesy of the PHF, Inc.

In 2012, the PHF has awarded over $110,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus Research & Education:

CHOC Foundation
Goodman Campbell Brain & Spine Foundation
Cameron Can Foundation
St. Cloud Hospital
Boston Children’s Hospital
Children’s Hospital Colorado
Yale-New Haven Children’s Hospital
Akron Children’s Hospital
Duke University Medical Center
Kapi’olani Medical Center for Women and Children
Kona Community Hospital
Nationwide Children’s Hospital
Albert Einstein College of Medicine
University of Utah
University of Illinois at Chicago

The PHF, an all-volunteer 501 (c) (3) dues free non-profit charitable organization, now boasts thousands of members across the Country, with over 30 State Chapters, and more to come!

Aila Elmore, 5 months old of Indiana, and Matthew Elicea, 9 years old of California, will serve as the PHF’s 2013 Ambassadors for our “National Face of Hydrocephalus Awareness” Campaign, as we head towards the 5th Anniversary of Hydrocephalus Awareness Month in September.

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 your choice of Hospital/Neurosurgeon & a 2 NIGHT STAY @ the Embassy Suites in Washington DC during our 3rd Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/22 & 8/23 in 2013, (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 12/31/2012 & Winners announced on 1/2/2013
* Email your picture to mike@hydrocephaluskids.org
* Last year’s 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:

Christina Brown, (PHF State Chapter Co-Director of Colorado), & her son Jaden, present Neurosurgeon Dr. Todd Hankinson with a check from the PHF for $500.00 to Children’s Hospital Colorado Neurosurgery.

Jaden was the PHF’s 2012 National Face of Hydrocephalus Awareness for the boys.

When Danielle Roberts was pregnant with her second child, Reagan, her doctor diagnosed hydrocephalus, a condition in which an excess of cerebrospinal fluid built up in the infant’s brain. Doctors delivered Reagan
on March 8, 2011, at Vanderbilt Children’s Hospital in Nashville.

Years earlier, another Hartselle woman, Leslie Etheridge, went to Decatur General Hospital for what she thought would be a normal delivery. “I ended up in an emergency (cesarean) section,” Etheridge said. “Even then, I had a difficult time because the baby’s head was so long.” She said she had never heard of hydrocephalus until her doctor explained the condition of her only child, Kane.

“The term ‘water head’ or ‘water babies’ from high school days came to mind,” she said. “Our son was taken immediately to (Children’s of Alabama) in Birmingham.”

When Etheridge heard about Roberts, she sent an email to offer support.

“During the past year, we’ve emailed each other, spoke on the phone and gone on Facebook,” Roberts said. “But we’ve never met.”

That will change Saturday at Wilson Morgan Park when the families converge at noon for the first fundraiser in Alabama for the Pediatric Hydrocephalus Foundation.

The event, organized by Roberts when she became director of the state chapter late last year, will run until 3 p.m. The foundation formed more than three years ago and has chapters in 27 other states.

The Morgan County sheriff’s helicopter will drop in, and Hartselle police donated an old police cruiser for a smash-up as part of the fundraiser.

“People who want to take part will wear safety goggles,” Roberts said. “Three hits will cost $5 and five hits will cost $8.”

The group requests a $5 donation for each person who attends and meal tickets for the hot dog bar will be $2 each.

Roberts and her husband, Kel, have another child, Kayden, 6, a first-grader at Priceville Elementary School.

Etheridge and her husband, Mike, have assisted Kane, 17, their “miracle baby,” through the ups and downs of life. He is a senior in the Instructional Resource Center at Hartselle High School.

Roberts has no idea how many people from the community will turn up to show their support Saturday or how many new friends, whose lives are impacted by hydrocephalus, she will meet.

“We’re so new to this,” she said. “We don’t know of many other families dealing with the disease. But we’d like for all of them in our area to come forward so we can offer each other support.”

Kane Etheridge, taking a break from an adapted physical education class at Hartselle High on Wednesday, eagerly spoke about his interests, which begin and end with “Star Wars” movies.

“I’ve recently started making my own movie, called ‘The Rise of a New Empire,’ ” he said. “I’ve got 50 percent of the manuscript done, I think. I’m typing it on my dad’s computer.”

Belinda Kay, a Hartselle High special education teacher, said Kane is involved in numerous classes and activities at the school.

“He’s very well liked and a very confident person,” Kay said. “At least half the students know him by name. The Tiger Buddies Club nominated him for Homecoming King.”

The Etheridge family is considering a vacation to Los Angeles in 2013 to honor Kane’s graduation. And Kane is confident he will meet George Lucas at the filmmaker’s home in nearby Modesto.

“I’m going to go over my movie with him and ask him for a job,” Kane said. “And when he sees my movie, he might hand me his company.”

Strikes 1 in 500 children

AR KIDSfest raises awareness about brain condition

Watch Interview HERE

LITTLE ROCK, AR – Sunday, an Arkansas woman organized the Little Rock KIDSfest to raise awareness about a rare brain condition impacting her son’s life.

Hydrocephalus has no cure right now and happens when fluid builds up inside the skull leading to brain swelling.

Cessilye Lawson is the Arkansas State Chapter Director for the Pediatric Hydrocephalus Foundation.

“We’re here to find a cure. There’s no cure for hydrocephalus. Many children endure several brain surgeries because the treatment right now is several brain surgeries. The treatment right now is an implanted device in their brain,” says Lawson.

Her son, Taylor, has the rare brain defect which causes baby’s heads to double their normal size.

Sunday, Lawson organized the first Little Rock KIDSfest to help find a cure for the brain condition which affects about one-million Americans.

“Last week we had one that passed away. She was four and she had endured 25 brain surgeries, so this today is dedicated to McKinna,” says Lawson.

Lawson brought in a petting zoo, fire trucks and bounce houses to allow kids to have fun while their parents raise awareness to try to find a cure.

“If we all stick together, we can make it better for the cause,” says father Neil Hood.

“This is something we can do to try to raise money and awareness and help in any little way,” says mother Karen White.

“My three little girls, they don’t have it, but they could have it. So it’s always good to donate, especially for the kids programs,” says volunteer Calvin Key.