Murphy Joins Hydrocephalus Caucus

Hydrocephalus is a neurological condition caused by abnormal buildup of cerebrospinal fluids (CSF) in the ventricles of the brain. The condition can occur at any age, affects an estimated one million Americans, and in some cases, can cause death. One out of every 500 babies is born with hydrocephalus in the US, and is the leading cause of brain injury in children. Instances of hydrocephalus are also being found in an increasing number of veterans who develop the condition as a result of brain injuries suffered on the battlefield. Unfortunately, there is no known single cause of hydrocephalus and there have not been significant advancements for treatment over the last fifty years.

Jenna Sciulli, a resident of Chartiers Township in Washington County, has been working to raise awareness about the issue both locally and nationally. Sciulli, who serves as Pennsylvania State Director of the Pediatric Hydrocephalus Foundation (PHF) recently visited Rep. Murphy’s office to discuss the challenges facing parents of children with this condition. She knows first-hand what it’s like because her five-year-old son has hydrocephalus and must attend speech and physical therapy every week.

“I commend Mrs. Sciulli for her tireless efforts to educate lawmakers and the public about this healthcare issue,” said Congressman Murphy, who serves as co-chair of the Doctors Caucus in the House. “Thanks to her dedication, I am joining the Congressional Hydrocephalus Caucus to help inform members of Congress about important research into hydrocephalus diagnosis and treatment, so we may save lives and one day find a cure.”

On Friday August 24th, 2012 over 70 people representing 20 families from 14 States joined together for PHF’s 2nd Annual Hydrocephalus Awareness Day on Capitol Hill.

The event was a complete success as we had scheduled meetings with staffers for 35 Members of Congress and visited many more offices to drop off literature.

The event started on Thursday night with the PHF Meet & Greet Reception at the Embassy Suites Hotel. Friday morning we boarded buses and headed to the US Capitol, where we set up shop in the beautiful and historic Cannon Caucus Room. Meetings were held from 10:30 until 3:00pm at the various House & Senate Office Buildings.

Thank you to our Corporate Sponsors Medtronic & New Jersey Right to Life for underwriting the event.

Save the Date:
The 2013 3rd Annual PHF Hydrocephalus Awareness Day on Capitol Hill will take place Thursday August 22nd, (PHF Meet & Greet Reception) & Friday August 23rd, (Day on Capitol Hill)!!

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.