Aug 27, 2015 Press Release

Bipartisan Lawmakers Kick Off September National Awareness Month

Congressman Leonard Lance (NJ-07) today announced his partnership with Congressman André Carson (IN-07) to serve as the bipartisan co-chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus. Hydrocephalus is a debilitating neurological condition that affects over 1 million Americans. The Caucus will focus on increasing awareness and education and encouraging more research into its diagnosis and treatment.

“Hydrocephalus is a tremendous public health challenge of which there is no single known cause or ways to prevent or cure the condition. Education, research and communication are key tools to understand and confront Hydrocephalus and the Congressional Hydrocephalus Caucus will be a platform for those discussions. One out of every 500 babies in the United States is born with hydrocephalus, making the condition the leading cause of brain surgery in children. Additionally, an increasing number of our veterans are developing post-traumatic hydrocephalus as a result of brain injuries suffered on the battlefield,” said Lance, a member of the Energy and Commerce Health Subcommittee.

Congressman André Carson (IN-07) added, “I am pleased to join Rep. Lance in announcing the launch of the Caucus in the 114th Congress. Many families in my district in Indiana are affected by hydrocephalus. I look forward to working with the other caucus members and dedicated advocates to raise awareness of hydrocephalus and encourage more innovative research to improve diagnosis, treatments, and cures.”

Michael Illions, a Woodbridge resident and a leader in the Pediatric Hydrocephalus Foundation said, “Congressman Lance and Congressman Carson continue to show their support for the Hydrocephalus Community. We look forward to working closely with the Congressional Pediatric and Adult Hydrocephalus Caucus as it continues to grow. We thank them for their leadership of the Caucus.”

“I thank Congressman Carson for joining me in this effort and I commend the hard work of Michael and Kim Illions of Woodbridge, New Jersey for their advocacy on behalf of their son, Cole, and helping to lead this national conversation,” concluded Lance.

September is National Hydrocephalus Awareness Month. Recognizing the month of September as National Hydrocephalus Awareness Month brings public attention and encourages the discussions necessary to address more effectively the devastating effects of this disease and provide support to families who live with it every day.

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NEWBURGH — Rebecca Lopez of Newburgh has for years quietly assisted the Pediatric Hydrocephalus Foundation’s New York State Chapter to help raise awareness and money to fund research projects on this rarely talked about, incurable brain condition. Lopez’s son, 10-year-old Isaiah, is fighting the disease, in which excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. It occurs in approximately one of every 500 births and in over one million Americans today. Because of the lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives. Untreated, hydrocephalus can be fatal.

Wanting to do even more, Lopez decided to take a more active and public role, and asked about joining the New York Chapter as an additional state director and take on additional responsivities in the all-volunteer Pediatric Hydrocephalus Foundation.

“I am involved with the PHF to not only help raise awareness and fund a cure, but to let my son Isaiah know that I will support him anyway imaginable. My dream is to find better treatment options and one day, a cure,” Lopez said.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 35 state chapters, provides support to families, friends and children affected by this incurable brain condition. PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at the State and Federal levels to push for more research and support in the fight against Hydrocephalus. Since 2010, PHF has awarded over $350,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. For more information, visit hydrocephalusKids.org.

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12-Year-Old Madelyn Edgecomb From California Selected as 2015
National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Madelyn was diagnosed with congenital hydrocephalus due to aqueductal stenosis in utero at 21 weeks. She was born at 35 weeks and had first shunt placed at 1 day old. She has had 29 revisions,1 successful ETV and 4 chiari malformation surgeries. She currently is shunted along with the ETV.

Her neurosurgeon is Dr. Peter Sun of UCSF Benioff Children’s Hospital Oakland, (formally Children’s Hospital Oakland), who is amazing! Her shuntaversary is tomorrow and it will mark 1 year since her last revision! Madelyn loves to listen to music,reading, school,and making crafts. Madelyn loves her family and friends.

We are ecstatic to have Madelyn to be chosen as the female representative.Thank you to everyone for all the support over the years. I want to thank all the families of children who have hydrocephalus, for their continuous support.