7-Month-Old Aila Elmore From Gosport Selected as 2013
National “Face” of Hydrocephalus Awareness for Incurable Brain

Gosport, IN – When looking quickly at 7-month-old Aila Elmore, one would see a happy baby girl. When you look a little closer and see the scars and stitch marks on her head, a completely different story is being told.

Aila suffers from an incurable brain condition called Hydrocephalus, and the scars and stitch marks are the result of the brain surgery she has had to install the device in her brain, known as a shunt, that keeps her alive.

Occurring in approximately 1 of every 500 births and currently affecting over One Million Americans today, Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

Untreated, Hydrocephalus could be fatal.

Aila was selected as one of the two children to serve as this year’s “National Face of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Aila, whose family live in Gosport will represent the girls, while 9-year-old Matthew Elicea of California, will be representing the boys.

Aila will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards the 5th Annual “National Hydrocephalus Awareness Month” in September.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 30 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. Donations are tax-deductible.

Since 2010, PHF awarded $170,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.

The PHF’s Michael Illions, Vice-President & Director of Advocacy, & Jason Adams, PHF Michigan State CO-Director, attended the Rare Disease Lobby Day & Conference last week in Washington DC.

Michael met with staffers from Senator Robert Menendez & Congressman Rush Holt’s office, and personally with Congressman Leonard Lance, while Jason met with staffers from Congressman Mike Rogers, Congresswoman Candice Miller & Senator Carl Levin’s office.

One of the many ways PHF raised awareness about Hydrocephalus in 2012 was through outreach. Speaking to people whenever the opportunity presented itself, whether informally or formally, helps the cause.

Last year, the PHF was able to reach out to a whole new community in New Jersey by speaking to numerous Freemason organizations across the State of New Jersey.

One of the members of the Freemason Society happens to be a Dad to a teenager with Hydrocephalus. Freddy Stein also serves as the Event Coordinator for the PHF in New Jersey.

Thanks to that connection, we were able to educate hundreds of people about Hydrocephalus and we were fortunate enough to be the recipient of many generous donations.

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.