EDISON — Sponsors and participants are currently being sought for an upcoming charity walk set to take place in Roosevelt Park in Edison on Sept. 7 that will benefit people with congenital hydrocephalus.
“In the last 50 years, there have been previous few advancements in the treatments of hydrocephalus,” said Dory Kranz, the executive director of the Hydrocephalus Association.
Congenital hydrocephalus is a chronic neurological condition where an excess amount of cerebral spinal fluid (CSF) accumulates in the brain. The excess fluid exerts increased pressure on the brain, which can cause brain damage that affects the victim’s mental and physical abilities. The condition is caused by an imbalance between the body’s ability to produce CSF and its ability to absorb it properly, and the brain’s passageways may not drain or absorb fluid properly are impaired. The condition is present at birth. Babies born with it usually have a noticeably bigger head than other babies of the same age. The standard treatment for hydrocephalus is the surgical insertion of what is called a shunt, a flexible tube that drains excess fluid from the ventricles in the brain into other parts of the body, where it is absorbed. This treatment, according to the Hydrocephalus Association, has not changed radically since its inception in the 1950s and is a risky surgery that can often carry complications. This is not helped by the fact that who with hydrocephalus have difficulty with obtaining insurance and accessing health care as adults, since it is a chronic condition.
“One of the misconceptions about hydrocephalus is that once a patient is shunted, the condition has been fixed. But we know that 50 percent of all shunts fail within two years and it is common for people to undergo 10 to 30 brain surgeries over a lifetime. There must be a better way, and these walks will help us find it,” said Kranz.
Hydrocephalus, according to the Hydrocephalus Association, afflicts one to two in every 1,000 babies born.
The two-mile walk to raise awareness will take place Sept. 7 at Roosevelt Park in Edison, right at the start of what has been named by the state of New Jersey of HydrocephalusAwarenessMonth. Registration begins at 10:30 a.m. and the walk will start at 11 a.m., though it is recommended to register ahead of time. To register or donate, people are advised to go to www.hydroassoc.org/help/WALK and click on “Edison, NJ.” Refreshments will be provided.
There will also be a DJ, face painting and balloon making. All proceeds will go toward the Hydrocephalus Association, the nation’s largest nonprofit organization dealing with support, education, advocacy and funding for research. For more information, call Tom Smith at the association, 415-732-7043.