** Happy Birthday to the PHF!: This January, the Pediatric Hydrocephalus Foundation, Inc. celebrates the third year since our inception in 2009.**

Thanks to your generous support, the PHF celebrated many successes and accomplishments in the year 2011.

A PHF initiative at the end of 2010, 2011 started off with the formation in the U.S. Congress of the 1st ever Congressional Pediatric & Adult Hydrocephalus Caucus, founded by Congressman Leonard Lance of New Jersey & Congressman Tim Walz of Minnesota, which now stands at 20 members. For more information about the Hydrocephalus Caucus, please click here.

In a 12 month span, (December 2010 – December 2011), the PHF has awarded $70,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus Research & Education. For information on the PHF’s Grant & Donation program, please click here.

The PHF, an all-volunteer 501 (c) (3) dues free non-profit charitable organization, now boasts thousands of members across the Country, with 20 State Chapters, and more to come!

Last September, the PHF hosted the 1st ever Hydrocephalus Awareness Day on Capitol Hill in Washington, D.C., with over 25 speakers, and families from over 15 States participating. With the success of this visit, we will be hosting the next one in August of 2012.

Mackenzie Holcomb, 11 years old of Ohio, and Jaden Brown, 18 months old of Colorado, will serve as the PHF’s 2012 Ambassadors for our National Face of Hydrocephalus Awareness Campaign.

Jaden was born in April 2010, unknowingly as a healthy child with no known health issues at birth. Jaden’s head started to grow at a rapid rate around 4 month of age. My older son has a “large head” and has had an MRI to confirm that there is no medical condition. So at Jaden’s 4 month well check- we all didn’t think much of his “big head”. When his head continued to grow our doctor recommended he have an ultrasound which, then lead us to an MRI and neurosurgery consultation. Because of where we live in Southwest Colorado, we have to travel to Colorado Children’s Hospital for specialty treatment which is about 350 miles from where we live. During the first visit with Jaden’s Neurosurgeon, we learned about the large amount of extra-axial fluid on his brain and that Jaden had also suffered a stroke.

He has a large amount of brain damage affecting the left side of his brain and right side of his body. Jaden’s diagnosis is Hydrocephalus, infant Stroke, Cerebral Palsy and a vision condition called Cortical Vision Impairment. Jaden had his Shunt placed in 10-2010. Knock on wood his one and only shunt is working well and his MRI’s show a lot of improvement fluid wise. Jaden works hard with physical therapy, occupational therapy and speech therapy. He is little to no use of the right side of his body and is developmentally delayed. His movement is = to a 6 month old, and cognitive = to a 12 month old.

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.