Community. Clarity. Cure.

Seeking an end to hydrocephalus.

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain. Hydrocephalus affects over 1 million people in the U.S. alone. Approximately 1-2 babies for every 1000 births are born with hydrocephalus, but anyone can get hydrocephalus at any time through a brain injury or infection, among other reasons, or as part of the aging process.

In our effort to find a cure, HA pursues a three-pronged strategy.

COMMUNITY

Hydrocephalus means a lifetime of uncertainty for the families and individuals who are confronted with a diagnosis or who are affected by the condition. Naturally, they want to learn more, to understand what the condition entails, what treatments are available, and they want to know they’re not doing this on their own. We understand this, because many of us have stood in those same shoes. To help, HA gathers together valuable resources and connects individuals to larger communities that can provide support and understanding. By providing an online library and common space for those dealing with hydrocephalus, HA works to reduce uncertainty, advance the overall hydrocephalus community, and provide as much insight as possible into what remains an often challenging and bewildering condition.

CLARITY

Despite its broad prevalence, hydrocephalus remains a misunderstood and often hidden condition, and the general population largely remains unaware of the breadth and depth of the impact of hydrocephalus. This lack of clarity complicates diagnosis, and not surprisingly, it also results in limited funding. For example, while hydrocephalus is 30x more common that Cystic Fibrosis, it receives only 1/13th of the federal research money.

HA works to educate national and state policymakers, the medical community, and the general population about the nature and extent of hydrocephalus, and to focus attention on the condition and the legislation/attention needed for individuals to overcome challenges. Our Medical Advisory Board contains leading neurosurgeons, neurologists and other medical professionals and scientists to ensure that we are providing the most current and reliable information. We work to help others see the condition for what it is, so that it can receive the consideration it deserves.

CURE

Today, no cure for hydrocephalus exists, and the primary treatment – the insertion of a shunt into the brain – was developed fifty years ago and suffers from one of the highest failure rates of any surgical treatment. By focusing attention and research monies, HA works toward the ultimate end: a final cure to hydrocephalus.

Little is known about the causes of hydrocephalus, but recent research offers hope that a cure is indeed possible. Already we are seeing improved diagnostic techniques. New valve designs are improving the efficacy of the shunts used to treat patients. New treatment options have opened up the possibility of a life without a shunt for some individuals. Studies in biomarkers and genetics are providing promising insights into how we might prevent the condition from occurring. This is the power that research has, and every dollar matters. The more research we can fund now, the better the scientific foundation upon which future research will build. HA supports a Strategic Research Initiative that focuses on work that will truly advance our understanding of the condition, and with that, discover its causes, improve its treatment, and help us see an end to hydrocephalus.

Preston is a young man with Mitochondrial Disease, which leaves him with low muscle tone and developmental delays. He tires easily and has balance issues but everyday he wakes up smiling and determined to keep up with this friends and especially his big brother!

During the summer of 2011 Preston was blessed to have an adaptive bike donated to him through a fundraiser that was developed by a family friend. The Buenaga family was amazed by this overwhelming support, and they are determined to “pay it forward” by raising money (each bike costs between $1400 and $2500) for more children to realize their dream of riding their own bike.

Preston’s March for Energy was created with this goal in mind. With the overwhelming need for adaptive recreational equipment for children with disabilities and the concern for childhood obesity Preston’s March For Energy’s mission is to provide adaptive bikes to children with special needs.