Neurofibromatosis Research.com

You may be wondering why I'm pushing this issue so much, but I'm wondering why people don't seem go get it. The point of having your own website is to raise awareness.

Hanging out on message boards on other sites is great, a lot of people draw comfort from each other, but in my opinion, it's just a place for people to come together and talk about how miserable NF makes them and it doesn't help to raise awareness. It also doesn't help anyone get closer to an effective treatment for Neurofibromatosis.

If you go to your typical NF website with thousands of other people and you're sharing your story and telling of hardships, you're only sharing your story with other people with Neurofibromatosis and those aren't the scientists that are doing research, or the people with money trying to decide what charity to donate to. Guess what else, the scientists and the people with the money aren't going to read your story from that site, because it gets lost with all the other clutter of the site.

If you want your story to be heard and found by the search engines, you need to create your own website. Plus, with your own Neurofibromatosis website, you have so much more power to spread the word. You also have so many other options for raising awareness. For example, have you created your Charity Badge for Neurofibromatosis yet? Why Not? Is it because you don't have a site to post it on? If the answer is yes, then we're right back at my original question. Why don't you have your own Neurofibromatosis website?

If the answer is because it's too difficult, think again. Read this post on how to get a Neurofibromatosis domain name for your website. There's even a video, so you don't have an excuse anymore.

Unfortunatley, creating a website and telling a story still isn't enough. You need to get the search engines to your site so they can add it to search listings and other people can find your site. You could have the best Neurofibromatosis site in the world, but if no one can find it, it's useless.

The blog post I linked to earlier in this article also has information on how to get the search engines to your site.

What does this mean for you. You need to

• Create a Neurofibromatosis website
• Create a video and put it on YouTube and on your website
• Create a Neurofibromatosis charity badge and put it on your website
• Create a blog on your website and make a post once a day or once a week. Talk about NF and how it affects your life
• Submit your website to social bookmarking sites

Another idea for the Neurofibromatosis charity badges is you could create a competition. Have all of your friends you've met on other NF sites create their own websites and add a NF charity badge to their site. Then see who can get the most donations through their site.

Now there's something that's really productive and helps raise Neurofibromatosis awareness.

The tools exist for us to make a change ourselves. We have the choice to use them or we can sit around and hope that someone else will do it instead. My choice is to do something about it. What's yours?