Neurofibromatosis Research.com

I know this is a long post, but please take a few minutes to read it, I think it will make a HUGE difference.

I would like to propose a challenge to everyone that reads this blog posting. I kind of touched on this in on the front page of the site, but wanted to go into more detail in this post.

In my opinion, we are living in the most amazing time for communication. A nobody like me has the ability to put up a website in just a few minutes that has the potential to reach practically EVERY human being on the planet. This is amazing. This is something I couldn’t have even imagined 17 years ago when I was a teenager. Think about it. Local, small town high school rock bands have the ability to record, edit and broadcast their music to millions of people and completely without the help of the big music companies. I had a lot of friends in high school who were in rock bands and they would have loved to have this type of ability. A group of friends can get together and write, film, edit and broadcast their own TV show and it doesn’t require millions of dollars. I’m telling you folks, these are amazing times for communication. If a local band from some no name town can get their music heard by people around the world, then there is no reason why the thousands of people with Neurofibromatosis can't get their message heard.

The point I’m trying to make is the means for communication are there and we need to make sure we’re using all of them all the time. If you do a search on Google for different Neurofibromatosis related keywords, the first few pages are full of the larger websites instead of personal websites from individuals. We need to change this. Technology has come a long way and it’s not as difficult to create your own website as it used to be. You can get a domain name for less than $10 a year and find web hosting for less than $10 a month.

The challenge I want to propose is for everyone who reads this post to make it a point to create your own website and tell your story. This will help to raise awareness on many levels. When someone does a search for Neurofibromatosis related keywords, they’ll get information about the disease on the larger websites, but they’ll also see thousands of personal websites of people with pictures and video telling their stories. When you visit the larger websites, you read about how Neurofibromatosis affects thousands of people, but it’s really hard to comprehend just how many people that is and how devastating this disease really is. If someone reads that it affects thousands of people and then they also see personal websites from those thousands of people, it will have a much greater impact.

I’ve added links for getting a domain name and web hosting under the Fun Links section on the left. I hope everyone will read this and take up the challenge. As I mentioned earlier, it really isn’t as difficult as you think to create a basic website. Most hosting companies have what’s called a site builder that lets you choose a template for your website and add images and text using a visual point and click interface that you’re already familiar with. Once you create your website and get it hosted, be sure to start adding lots of content about your story. The search engines love content and the more you have, the more likely the search engines will start including your site in searches.

Once you have your hosting account and start working on your website, I recommend you add a Wordpress blog to your site. This is part of most hosting accounts and is just a matter of choosing the option to install Wordpress on your hosting account. Most of the time, you can contact the hosting company and they will do this for your or give you simple instructions so you can do it yourself. The reason for this is the search engines love blogs. There are lots of free blog and website type sites out there, but in my opinion, your story will make more of an impact if you have a website and domain that’s your own and makes it more personal.

If you need to get a domain name, please use this link and if you’re looking for web hosting, please use this link.

I really hope lots of people take this challenge. Wouldn’t it be nice to do a search on Google for some Neurofibromatosis related keywords and have the search results contain THOUSANDS of individuals telling their stories on their personal websites? If you have a Youtube video, be sure to embed that into your website or blog; nothing tells a story better than video.

You can even help to promote this website and other websites. At the bottom of this page, you’ll see something that says Help Us Spread the Word About Neurofibromatosis. If you click on the button below that text, you can actually submit this site and even your own site to all your favorite social bookmarking sites; there are hundreds of bookmarking sites out there and best of all, the search engines LOVE them. One note I would like to make about using bookmarking sites is when you're writing your titles and descriptions on these sites, make sure they're optimized for Neurofibromatosis related terms. All this means is don't write a title that says "Help Us Please". Your title and description should use the words like Neurofibromatosis support group, Neurofibromatosis research, Neurofibromatosis treatments and stuff like that. You can even link to this site and other NF websites from your website and blog. Links and social bookmarking sites are a great way to get your site noticed by the search engines.

Thank you very much for taking the time to read this long post. We can all make a difference, we just need to make ourselves heard.

Tell your friends about the Neurofibromatosis Challenge