Administration reply to link removal

August 15, 2006 at 12:56 pm

After reading so many of your posts venting about our new policy of disallowing links, we feel a reply is warranted. First, we are NOT deleting pictures – except for those that could be objectionable to others. In recent news when airline officials found that an explosive could have been made with a liquid or gel, [B]NO [/B][B]ONE[/B] was allowed to bring these items aboard. Same point!

However, there is a greater issue here. Since our site was hacked – through a link from the Discussion Forum, I might add – the Foundation has spent close to $15,000 to get the site up and running securely. Where do you think this money comes from? A large part of it comes from donations from people such as you, often in increments of only $10 and $25. Twenty five years ago this organization began around a kitchen table. The mission then, as it remains today, is to support and educate patients, families and healthcare professionals. We also fund promising research and advocate in Washington DC for your rights as patients. This is where your money should go! What do you think our supporters would think if they saw an offensive link (or post) on our Discussion Forum. Please think about these points and realize that we are making this site available to you as a service and we would like to keep offering it to you in the future. Thank you for your understanding.