Thursday, September 1, 2011

BUZZ: Hydrocephalus Awareness Month

September is National Hydrocephalus Awareness Month!

Through the wonderful world of Facebook, a couple of years ago I became "friends" with Michael Illions whose own son, Cole, is living with hydrocephalus. Although the condition is separate from our foundation's focus of hydranencephaly, the two often go hand-in-hand, as in Brayden's case. 

As a matter of fact, in many undiagnosed cases of hydranencephaly, severe hydrocephalus is the primary diagnosis. Since hydrocephalus is the severe build-up of cerebrospinal fluid (CSF) within the cranial cavity, it often shadows the fact that the cerebral cortex is actually quite minimal or even non-existent as in those with a hydranencephaly diagnosis.

It is our pleasure to wholeheartedly support the Pediatric Hydrocephalus Foundation, Inc. (PHF) and it's endeavors.

"Funding a Cure for Hydrocephalus"

About PHF
The Pediatric Hydrocephalus Foundation, a non-profit 501c3 charitable organization, educating the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.

The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible. 

For more information, you can click on "About PHF" above.
For the second year ever, September is being recognized as National Hydrocephalus Awareness Month. Here is the speech from PHF founder, Michael Illion, at the official flag-raising ceremony in Woodbridge, NJ at the start of September 2010:

"Thank you all for coming and being part of such a special event. While it is due to unfortunate circumstances that we are doing what we do, it is extremely heart-warming to see the support from so many family and friends within the Hydrocephalus Community here tonight to celebrate.

For the first time ever in this Country, a Flag will be flying in honor of “National Hydrocephalus Awareness Month”, and I want to thank the Mayor for being so supportive in our fight against Hydrocephalus. Thanks also goes to the Town Council and the Mayor’s staff for putting this event together and making it such a success.

Let me just add something to show how important it is what we are doing. One of our families who helped create the PHF with us, the D’Oria’s, is unable to join us tonight because they are at the hospital with their 17 year old daughter Adrienne, who is having a Hydrocephalus related brain surgery today. It is her 2nd surgery in the last 6 days.

The question is never IF they will have to go to the hospital for yet another surgery, but WHEN. That is the cold hard reality of what these kids and everyone with Hydrocephalus has to deal with. That culture of despair and what this brain condition does to those with it, needs to be changed.

There is so much more that needs to be done. But the accomplishments that we, the Pediatric Hydrocephalus Foundation, have made in just under 2 years is a strong start, and shows a promising future for our children. We went to Congress and a National Hydrocephalus Awareness Month was passed in the United States. We went back to Congress and we now have a request pending for $4.5 MILLION DOLLARS in Federal funding to the NIH to be used specifically for Hydrocephalus Research, thanks to Congressman Lance’s efforts.

As early as fifty years ago, this brain condition was pretty much a death sentence in this Country, and it still is in other Countries. At some point in the past, we all started this journey not even knowing what the heck Hydrocephalus was, and now, working together, one day we are going to defeat it.
So we continue to what we do; for my son Cole Illions, for my little friends Ally Janson, Jeffrey Westdyke, Derek Fischer & Anthony Pascale in New Jersey; Ben & Drake Mantheiy in Pennsylvania; BraydenThew & Thomas Mingst in New York; Caitlin Minasian in Rhode Island; Ezekiel Spinks in Georgia; Haley Purdy in Kentucky; Ryan Cole in Maryland; Jack Marquis in Connecticut; Justin Walker in California, who is being raised by his grandparents @ 7 years old, and the list goes on and on."

The Face of Hydrocephalus Video 2011
*scroll down to stop our blog's music player*

"While it is great to be here to celebrate and recognize a month of ‘Awareness for Hydrocephalus’, the real day of celebration for our children is when we are here one day recognizing a ‘Cure for Hydrocephalus’." ~
Michael Illions, Founder/President of PHF

And on that note... one day there will be a nationally recognized Hydranencephaly Awareness month, or I'll even take a week or just a day. Hopes, dreams, and motivation... it will happen. In the meantime, wear a yellow ribbon to recognize hydrocephalus also represents "hope".

"Let us not look back in anger or forward in fear, but around in awareness."
- James Thurber

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