The Hydrocephalus Association Mission:

From The Blog

Making Life Happen: Living Life with Spina Bifida and Hydrocephalus

October is Spina Bifida Awareness Month and today is the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. Individuals within our community live their lives with both spina bifida and hydrocephalus. The National Institutes of Health (NIH) define spina bifida (SB) as a neural tube defect (a disorder involving incomplete developmentof the brain, spinal cord, and/or their protective coverings) caused by the failure (more…)

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October is National Bullying Prevention Month

“Bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time. Both kids who are bullied and who bully others may have serious, lasting problems.” (stopbullying.gov)

Bullying. We hold on to the 1950s image of the big kid on the playground taunting, name calling, pushing, and intimidating other children. While that image still has validity, bullying is not the exclusive domain of boys nor is it necessarily one child bullying other children, as stories of peer group bullying in the national media have shown. Even the landscape of bullying has changed. (more…)

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“Fall back” isn’t the way to start off this season!

by Dawn Mancuso, CEO

As September comes to a close, and we all start thinking about what fall will bring, we often talk about the cooler temperatures, the changing color of the leaves on the trees, the children going back to school, and the shortening number of daylight hours.

This year, we hope you also thought of Hydrocephalus Awareness Month, or HAM as we’ve been affectionately calling it in our offices. The goal of Hydrocephalus Awareness Month is to bring attention to and understanding about the condition of hydrocephalus among a number of key target audiences, such as public policy makers who have an impact on the amount of public funding available for research; the medical and scientific communities who actually dedicate their lives to treating patients and conducting research; and advocates like you and me who can be motivated to share patient stories and experiences with the media, community leaders and others. (more…)

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What Do We Want? A CURE! When Do We Want It? NOW!

September was Hydrocephalus Awareness Month, a special time to raise awareness nationwide as many eyes turn to our cause as it receives some higher attention nationally. However, we should see every month of the year as our opportunity to raise awareness about hydrocephalus and the one million people living with this condition in the United States today. The current election cycle is an excellent opportunity to raise our voices in the media and, once again, in Congress to make sure that elected officials and candidates alike know we are here and that we have a powerful reason to be heard. Let’s continue educating both the current and possible future politicians about hydrocephalus, reminding them that voting constituents in their areas are affected by this condition. (more…)

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