Information is only as powerful as it is accessible.
We just recently launched two different websites focused around a life-threatening disease called, hydrocephalus. Why you may ask? One really important reason is because there is no cure…yet. Of equal importance is the fact that symptoms of the disease can manifest in many different ways. Many doctors, family members, and individuals battling the disease are uninformed and ill-prepared to handle the symptoms, let alone recognize them when they first manifest. Part of the remedy is to put information out that is accessible to anyone, anywhere, at any time.
As stated on the website, “Hydrocephalus is a chronic neurological condition characterized by an increased volume of cerebrospinal fluid (CSF) within spaces inside the brain.” In layman terms, it is water on the brain, which causes swelling, brain damage, and even death. It is more common than you may know. In fact, more than 1 million people in the U.S. alone have been diagnosed with hydrocephalus, and it is believed to occur in 1.5 of every 1,000 births.
The Hydrocephalus Association website is in its first phase of development. Aside from the access to information you readily see at first glance, the other features of the site facilitate Member Signup and Donations, both of which integrate with Salesforce to manage the data and the relationships with those involved with the organization. Because the organization relies heavily on its active community, there also handy little features like the Flickr Uploader application, which gives people the ability to upload their photos and add search-friendly descriptions. There is more to come.
I briefly mentioned the importance of community as it relates to hydrocephalus. Many of you who participate in social networks and blogs understand the power of online interaction and communities; but for many it is still relatively new ground. The purpose of GabrielsLife.org is to create and foster community participation in order to generate greater awareness around the disease, as well as empower people with helpful information. The site gives people tools to communicate not only with one another, but also the world at large.
Gabriel’sLife.org is a custom build using WordPress. On top of that it allows users to create their own WordPress blogs as part of the network. There is also a forum, and the ability for people to search for others and connect to share information privately if they so choose. Finally, visitors are encouraged to submit their own stories, which are featured on the homepage. These tools are designed to tap into the collective knowledge base of those who have faced the complexities of the disease so that others are better prepared to handle their own. While still in its infancy, the site appears to be serving that purpose.
My main hope for this blog post is that you will see it and read it and tell someone about it. You will meet someone that has or knows someone else with hydrocephalus, and they will go and start to use these sites and tell someone else. And so on, and so on, and so on….