Read more at: https://html.com/attributes/img-width/>
CONGRESSMAN LANCE: SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH
September 24, 2012 by PHF
Filed under Uncategorized
WASHINGTON– Congressman Leonard Lance (NJ-07) issued the following statement in support of September as National Hydrocephalus Awareness Month.
“Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus.
This condition can occur at any age and affects an estimated one million Americans.
In fact, 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.
Currently, there is no single known cause of hydrocephalus or ways to prevent or cure the condition.
The National Institute of Neurological Disorders and Stroke is currently conducting research related to hydrocephalus prevention and treatment. However, more must be done at the community level to educate the American people about this surprisingly prevalent disorder.
Recognizing the month of September as National Hydrocephalus Awareness Month will bring this disease to the public’s attention and, I believe, will encourage the discussions necessary to address more effectively the devastating effects of this disease and provide support to families who live with it every day. Today I commend the hard work of the Michael and Kim Illions of Woodbridge, New Jersey for their advocacy on behalf of their son, Cole.
I am certain that with federal support for additional research we can develop a better treatment, and eventually a cure, for those suffering from hydrocephalus and help them live healthier, fuller lives.”
In the House of Representatives, Lance is a founding member and co-chair of the Congressional Hydrocephalus Awareness Caucus and actively works to raise awareness of the disease.
In the photo: Rep. Lance talks with Cole Illions of Woodbridge (NJ) whose parents Michael and Kim have worked tirelessly to educate members of Congress and the public about Hydrocephalus.
Article on Hydrocephalus Flag-Raising Event in Woodbridge, New Jersey
September 22, 2012 by PHF
Filed under Uncategorized
Featured in picture; Jeffrey W., Ally J., Cole Illions & PHF President Kim Illions & Vice President & National Director of Advocacy Michael Illions
PHF’s Carrie Edgecomb & Daughter Interviewed on FOX26-TV
September 21, 2012 by PHF
Filed under Uncategorized
The PHF’s very own California State Chapter Director Carrie Edgecomb and her daughter Maddy were featured live on Fox26 TV to talk about Hydrocephalus Awareness Month and the PHF California WALK & Family Fun Day on 9/30 in Fresno, CA.
Congressman Joe Wilson & Congressman Mick Mulvaney Join Hydrocephalus Caucus
September 14, 2012 by PHF
Filed under Uncategorized
We are pleased to announce that 2 more Members of Congress have joined the Congressional Pediatric & Adult Hydrocephalus Caucus. They are South Carolina Congressman Joe Wilson & Congressman Mick Mulvaney, also of South Carolina.
Since our DC Event just 3 weeks ago, five Members of Congress have joined the Hydrocephalus Caucus.
Durangoan seeks hydrocephalus cure
September 12, 2012 by PHF
Filed under Uncategorized
Woman’s son, 2 years old, has brain condition
The mother of a 28-month-old Durango boy with hydrocephalus has taken on the leadership of the Colorado chapter of the national Pediatric Hydrocephalus Foundation, a support group with a presence in 25 states.
“I’m promoting awareness of hydrocephalus and raising funds for research,” Christina Brown said Friday. “There is no cure now, which is unacceptable.”
Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. This can cause pressure in the skull, resulting in enlargement of the head, convulsion, tunnel vision, mental disability and possibly death.
The first fundraiser for Brown’s group is set for Sept. 23, when participants will bowl at Rolling Thunder Lanes at the Sky Ute Casino in Ignacio.
Brown began gathering information on hydrocephalus when a pediatrician recommended during a well-baby check at 4 months that her son, Jaden, be tested for a neurological disease. Examinations revealed that he had hydrocephalus and hemiplegia (stroke-induced spasticity) on his right side.
She rattles off facts such as:
One in 500 newborns receives a diagnosis of hydrocephalus.
The disease can be congenital or acquired.
Hydrocephalus is the No. 1 reason for pediatric brain surgery.
Americans spend $1 billion a year on treatment for hydrocephalus.
Research into diabetes is funded at $6 per person, hydrocephalus at 30 cents per person.
Brown was in Washington for two days two weeks ago with other families who have children with hydrocephalus to educate legislators and others about the disease and promote research.
“There were 20 families from 14 states,” Brown said. “We’ll contact them again next year for funding for research.”
Josh Green, a spokesman for U.S. Rep. Scott Tipton, R-Cortez, said the group left a packet of information for the congressman. Tipton wasn’t in the capital at the time.
Brown knows four families and one adult in Durango who have hydrocephalus in the family. She said there are about 30 similar families in the Four Corners.
“Jaden is fine,” Brown said. “He just had surgery as a result of being tongue-tied and is doing well.”
The recently formed hydrocephalus chapter held its first meeting in July. The next meeting is from 5 to 7 p.m. Oct. 12 in Durango Public Library.
