May 2012 LivingWithNarcolepsy Community Newsletter

Dear Friends and Family of LivingWithNarcolepsy,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

Here are some highlights:

Total members for all communities at the end of April: 17,629. This is 924 higher than March, our biggest monthly gain ever, and our fourth consecutive peak.

Our community sites were visited 111,270 times last month, surpassing even our June 2012 target of 75,000. Of these 54,242 are unique visits, more than the 38,000 we targeted for the same month.

Total page views to our sites reached a spectacular number of 514,437 views, more than the 385,000 we projected for June

What brought this phenomenal growth? Your contribution to this growth, no matter how small, cannot be discounted. Last month, we recorded 8,032 blogs and 11, 438 discussions. Behind the scenes we know that some of you are also heeding our admonition to spread the word about us by your Tweets, Facebook updates, Pinterest boards, and by word of mouth.

We have no way of measuring these, but we have a way of rewarding your effort, and that is by levelling up our service to you!



1. Welcome New Members

2. Kudos from Around the Internet

3. Community Stats

4. Stretching out the Tent Cords


Welcome New Members


Welcome to our family! You have come to the right place. Here you and your family can find emotional support from those who have been to where you are now, and are in the position to share what works in facing the challenges of a rare disease. Feel free to browse through every member's profile, invite and accept friends at will, and share your thoughts liberally through your comments and blogs. You may also share in our Facebook and Twitter pages. (Check out

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Kudos from Around the Internet


Not only is our growth in terms of numbers, but also in the circle of our influence. Media and other external links are slowly recognizing our mission.

One such example is an article in in response to Harvard Business Review’s downplaying of the Internet. The writer cited our as an example of innovative organizations that use the Internet as “a powerful force that connects people and families with diseases together for sharing treatments, stories of hope and support”.

We are so proud to have all of you as part of our team in advocating for support for rare disease patients. We know that these are a result of our collective effort.

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Community Stats:


Number of Members as of May 1, 2012 : 13

New Members Joined Last Month: 3

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Stretching out the Tent Cords


At the rate we are going, we at are making preparations to accommodate further increase. More members coming in mean more traffic and activity in our communities. We want to invite more of you who are in the position to do so to help as moderators in our sites.

The number of visits we receive indicates a growing interest to our cause. These are potential members who will be encouraged to join if they find very interesting activities in our forums and blogs. So keep those comments and discussions flowing and share your stories. Make your individual presence felt.

Let us maintain our momentum and we will be greatly rewarded with our efforts.

Thank you.

Your Community Moderators