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.

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.

WASHINGTON– Congressman Leonard Lance (NJ-07) issued the following statement in support of September as National Hydrocephalus Awareness Month.

“Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus.

I am certain that with federal support for additional research we can develop a better treatment, and eventually a cure, for those suffering from hydrocephalus and help them live healthier, fuller lives.”

In the House of Representatives, Lance is a founding member and co-chair of the Congressional Hydrocephalus Awareness Caucus and actively works to raise awareness of the disease.