PHF Featured Story: Glen Ridge High School Junior Goes to Congress

High School Teenager Collette Umar talks about her experience on Capitol Hill for the Hydrocephalus Awareness Day event

Read the full story: Last Friday, September 23, Glen Ridge High School student Colette Umar delivered a speech in Washington, DC at the first Congressional Adult and Pediatric Hydrocephalus Caucus.

The caucus, was co-chaired by Congressman Leonard Lance and Congressman Tim Walz along with the Pediatric Hydrocephalus Foundation. It was held in the Cannon building and was attended by members of Congress, aides, medical experts, foundation personnel and families affected by hydrocephalus.

  Collette and her father Erich Umar.

PHF Featured Story- PHF GA 1st Annual Hydrocephalus Awareness WALK & Family Fun Day

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LOCAL PROFILE: Sawanda Spinks, President of Georgia Pediatric Hydrocephalus Foundation

Read the full story by Eden Godbe: ATLANTA – Sawanda Spinks was eight-months-pregnant when she learned her first child would be born with hydrocephalus.

“I had never heard of it; I didn’t know what it was but when I heard the risks, I started crying; I couldn’t take listening to that”, she said.

Spinks had gone into the emergency room for a pulled muscle but when she left her life was changed, forever.

Hydrocephalus is a condition that affects 1-in-500 infants. The condition, also known as having “water on the brain”, happens when fluid accumulates on the brain and in the skull cavities.

As any first-time parent would Spinks visited countless specialists, searching for good news, before she would give birth to her son a month later; she heard none.

“Doctors didn’t give us much hope but they were doing their job, they’re supposed to tell you the worst case scenario”.

PHF Sponsors Hydrocephalus Awareness Day On Capitol Hill

The Pediatric Hydrocephalus Foundation will be hosting a Hydrocephalus Awareness Day on Capitol Hill event on Friday, September 23rd, thanks to the Congressional Pediatric & Adult Hydrocephalus Caucus, chaired by Congressman Leonard Lance- (NJ), and Congressman Tim Walz- (MN). Parents of children with Hydrocephalus, teens and adults with Hydrocephalus, and members of the Medical Community will make presentations and tell their stories to Members of Congress and their staff. The Hydrocephalus Awareness event on Washington, DC is the first of it’s kind for the Hydrocephalus Community and the PHF is proud to be able to organize it. Immediately following the event, we will be walking the Halls of Congress and meeting with our individual Congressional Representatives for one on one discussions. For more information please email mike@hydrocephaluskids.org.

September…. Is…. National Hydrocephalus Awareness Month!!!

SEPTEMBER.. IS… HERE!! It is now “National Hydrocephalus Awareness Month”.. The PHF has produced an Hydrocephalus Awareness Infomercial, asking “Who is the Face of Hydrocephalus?”

It’s very emotional and gives a small glimpse into this incurable life-threatening, and certainly life-changing brain condition.

Watch it.. Then share it with your family and friends

PHF Featured Story

PHF Colorado State Director Ashley Fallis, her husband Thomas, and their son Blake, were featured in the Greeley Tribune.

Read the full story by Chris Casey: Blake Fallis appears to be a normal 3-year-old boy. He’s rambunctious. He asks his parents for their cellphone so he can play with the keypad. He likes to ride his tricycle.

But he has a curious-looking lump that curls from the top of his scalp down the side of his mohawk-shorn head and disappears at the base of his skull.

Little does the observer know, the scarlike lump is a shunt and tube running from the crown of his skull down to his abdomen, where it allows cerebrospinal fluid to drain and be reabsorbed into the body.

Up until two years ago, Ashley and Tom Fallis of Evans didn’t worry about Blake’s brain. He seemed to be a perfectly normal toddler — albeit one with a large head.

“We just thought he had a big head — that he took after his dad,” Ashley says with a chuckle.

But all that changed a couple of days after Thanksgiving 2009 when Blake tugged on a thread of beads that strung together a row of fireplace stockings, and their heavy holders, pulling one of the holders down onto his head.

After taking him to an urgent care clinic in west Greeley and not getting a CAT scan — a physician assistant said a scan was probably unavailable that day — they took him to North Colorado Medical Center the next day. Ashley worked in the intensive care unit at NCMC at the time, and Tom called to tell her the scan found no bleeding but “moderate hydrocephalus.” Hydrocephalus is known as water on the brain, but it’s actually an inability of cerebrospinal fluid to drain properly.

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