The HydroWarrior Joins the PHF!

Ashley Fisher, author of HydroWarrior: A parent and child story living hydrocephalus from diagnosis to treatment, and Mom to Hydro Hero Bailey, has joined and will be partnering with the Pediatric Hydrocephalus Foundation, (PHF), as a National Spokeswoman.

With an expected book launch in the 4th Quarter of this year, Ashley will be promoting her book, raising awareness and fundraising all over the Country.

“We are thrilled to have this Hydro Warrior joining with the Pediatric Hydrocephalus Foundation and our community of Hydro Heroes!”, said PHF President Kim Illions.

Ashley will also be the Keynote Speaker in Washington DC at this year’s PHF National Hydrocephalus Awareness Day & Conference on Capitol Hill on August 19th.

“It is such an honor to join the PHF family! I feel that our partnership is a perfect fit. All book proceeds of HydroWarrior will be donated to the Pediatric Hydrocephalus Foundation. Their consistent dedication to funding a cure for hydrocephalus has made the decision that much easier!”

About Ashley Fisher

Ashley Fisher, a sales executive for a Berkshire Hathaway company and two year old daughter, Bailey, currently reside in Castle Rock, Colorado. Bailey was diagnosed with severe Congenital Hydrocephalus during her 24 week prenatal scan and has endured 6 surgeries with two of them being craniofacial repair surgeries. Through many trials and tribulations, Ashley decided to take a stand and join other hydrocephalus advocates in hope to raise awareness and find a cure.

Her first strategy was to bring more awareness around the condition by writing and publishing HydroWarrior along with neurosurgeon, Dr. Charles C. Wilkinson. Although it has not been released yet, HydroWarrior’s book campaign is currently carrying a strong audience through social media in India, Somalia and the Philippines, Ashley hopes to one-day take her advocacy across the world and raise research funding in well needed countries.

About the Book

HydroWarrior dives into an informative perspective as a parent (Ashley Fisher) of a child (Bailey) with Hydrocephalus. Hydrocephalus, commonly referred to as “water on the brain:, can be a life-threatening condition that affects one in a thousand babies in the U.S.

About PHF

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.

The PHF, Inc. is a non-profit 501 (c) (3) charitable organization, made up of volunteers.

Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.

Ohio Governor John Kasich signed a Resolution last week recognizing September 2014 as Hydrocephalus Awareness Month throughout the State of Ohio.

Special thanks to PHF Ohio State Chapter Director Ashley Pope for making this happen!

Rare Disease Report:

The Pediatric Hydrocephalus Foundation (PHF) was established by Kim and Michael Illions to raise awareness of this brain condition and provide support to the families living with hydrocephalus.

Combining both of those activities, the foundation will be in Washington this August to educate legislators about hydrocephalus and the foundation will provide assistance to all families wanting to attend this annual event.

PHF is also heavily involved in the community and has multiple fundraisers throughout the year, including ones at Detroit Tiger games.

Hydrocephalus — also referred to as water on the brain — is a lifelong condition in which persons have excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. Current treatment is usually to surgically insert a shunt that drains the excess CSF to other areas of the body (usually the abdominal region). During a person’s lifetime, multiple surgeries are usually necessary to replace or fix the shunts.

Both winners will be featured as the PHF’s Spokesperson in a National Campaign to raise Hydrocephalus Awareness in 2012 leading us into September’s National Hydrocephalus Awareness Month!

You can watch the drawing life tonight @ 8:00pm EST by going on the Internet and visiting http://www.ustream.tv/phfcontest
(This is free and no additional software or hardware is required)

In addition, as soon as the drawing is finished, a copy will be loaded onto Facebook, Youtube and PHF Website.

On Friday, September 23rd, the first ever ‘Hydrocephalus Awareness Day on Capitol Hill’ was held in Washington, DC. The Pediatric Hydrocephalus Foundation, Inc., in conjunction with the Congressional Pediatric & Adult Hydrocephalus Caucus, sponsored the event. New Jersey Congressman Leonard Lance and Congressman Tim Walz of Minnesota started the Hydrocephalus Caucus in January 2011.

Families, children and adults living with Hydrocephalus, Neurosurgeons, and Physicians were among the over 30 speakers who presented their stories to members of Congress and their staff.

Congressman Leonard Lance opened up the event with a moving speech to those in attendance dealing and living with Hydrocephalus. Congressional staffers represented Members of Congress who could not join the event in person, including representatives for Congresswoman Michele Bachmann, Congresswoman Renee Ellmers, Congresswoman Judy Biggert, Congressman Steve Rothman and Congressman Joe Crowley.

Congressman Dan Beshnick of Michigan who stopped by to personally meet with residents from his home State who were speaking at the event, including the Michigan State Chapter Director of the PHF, Inc., Jason Adams and his son Hawke, who has Hydrocephalus.

The event was attended by families from across the country and at least 9 different states including California, Colorado, South Carolina, Florida, Washington, New York, New Jersey, Michigan and Nevada.

Most of the families traveled to Washington, DC at their own expense or held fundraisers to make the historic trip. “The PHF Day on Capitol Hill has been a long time dream for me that came to fruition. Being able to speak and listen to those that spoke that day, I am enlightened. I feel very fortunate to have the support of the Hydrocephalus Community, PHF members, and those members of Congress who continue to support a resolution to the Hydrocephalus awareness and funding crisis. We still have a lot of work to do, but if we keep up this momentum, we will accomplish all of the goals we set forth,” said Kim Ruiz, the California State Chapter Director of the PHF.

The PHF, Inc. was represented by several of their State Chapter Directors including Ashley Fallis of Colorado, Amanda Pierce of South Carolina, Shay Hague of Florida, Cassandra Thew of New York, Jessica Garner of Western New York, Jason Adams of Michigan and the Founding members of the PHF Inc., Kimberly & Michael Illions, Mary Ann & John D’Oria, Michelle & Mark Janson & Jennifer Westdyke, all from the New Jersey.

Immediately following the event, the attendees went on to visit with each of their Congressional Representatives to discuss the importance of more funding for Hydrocephalus research and to increase awareness of this incurable brain condition.

Hydrocephalus affects 1 in every 500 newborns and over 1MILLION Americans today. If left untreated, Hydrocephalus would be fatal. The only treatment is the placement of a shunt in the brain that helps divert and drain the excess fluid to the abdomen. Hydrocephalus can also be acquired, most commonly due to a traumatic brain injury. Congresswoman Gabrielle Giffords, who suffered a brain injury in January, developed Hydrocephalus and was shunted in May.

The Pediatric Hydrocephalus Foundation, Inc., is the nation’s largest organization dealing solely with the support, advocacy, education, and funding for research of Pediatric Hydrocephalus, the number one cause for brain surgeries in children.

For more information please visit us at www.HydrocephalusKids.org

 PHF’s Michael Illions introduces Congressman Leonard Lance to begin the FIRST EVER Hydrocephalus Awareness Day on Capitol Hill.

 PHF’s State Director Kim Ruiz of California tells her son Joey’s story about living with Hydrocephalus as Michelle Janson of New Jersey looks on.

 Michigan Congressman Dan Benishek, who is also a Doctor, stops by the event to spend some time with Michigan’s PHF State Director Jason Adams, who spoke later on about his son Hawke.