It’s Official, Three Year Ago Today, We Opened The Site
It’s hard to believe it has already been three years. We could never have imagined running this organization before the unfortunate closure of our old home. Thank you so much for joining and helping others going through narcolepsy, idiopathic hypersomnia and other sleep disorders. Without our members, we would not exist. It warms our hearts to see so many of the former members of the Narcolepsy Network come aboard and are inspired and to see so many new members join our little family.
We started https://www.narcolepsysupport.org/ in July of 2017 in response to the sudden closure of the Narcolepsy Network Forums, which had tens of thousands of posts. Hundreds of people with narcolepsy were left without a home. Despite our pleas to continue to operate the NN forum, they fell on deaf ears. We were told to join the Facebook group. While, that’s fine if you don’t mind the entire world knowing you have narcolepsy, not to mention the massive privacy issues with FB. We started a Gofundme and within 24 hours met our goal. With the help of some very sleepy volunteers, launched the site just days after the old forum closed.
What We Have Accomplished:
- Provided support and answers for hundreds of PWN regarding diagnosis, treatment, and living with narcolepsy
- We are the fastest growing narcolepsy/IH support forum website and the only one operated entirely by PWN
- We have grown from a little over 100 members to almost 800
- We are now on the first page of Google for our target keywords
- Dr. Anil Rama, a sleep specialist has graciously donated his time to help out and done an AMA, answering questions you folks submitted.
- We have provided legal tips by a PWN attorney, driving laws, and other content to better serve the community.
- Provide a comprehensive guide on the available treatments and on getting diagnosed
- Continue to raise awareness since so many PWN go undiagnosed or misdiagnosed for several years or in some instances decades
- Organize and unite people with sleep disorders so we can advocate for better treatments and more funding for related research
How We Are Different:
- Privacy is important. We will never share your information, use it for financial purposes, advertising or the like, unlike large commercial websites
- We are entirely free to join and there are no membership fees (we aren’t even accepting donations)
- We will never accept donations from pharmaceutical companies or other entities with a financial interest in people with narcolepsy
- We are entirely non-profit. The administration receives no payment for anything related to this organization and is entirely composed of volunteers with sleep disorders
First off, happy holidays to all our fellow PWN! Hope you have a great time, and the break from work/school/etc gives a much needed recharge to your sleepy brains! Secondly, yes, maintenance! There’s been a bunch of little things I’ve wanted to do to the site, but real life has rendered me unbored for the past few months. With the extra time off, I hope get some of the odd and ends accomplished that have fallen by the wayside. So, if you see anything screwy around the Christmas holidays, never fear, it’s just me breaking stuff while I fix it! If it persists afterwards, be sure to let us know, as that will most likely mean I’ve done something dumb and not noticed it. Cheers!
Hi all! If you’ve noticed our site is having trouble loading, you are not the only one. Our web-provider Dreamhost is currently under a DNS DDOS attack. Access may be sketchy until they are able to fully mitigate the issue. Thanks for bearing with us.
Check us out on Instagram at @NarcolepsySupportOrg! You can always click the Social Media button in the top menu to see our latest posts.
We are still trying to find ways to raise awareness for our organization, and in turn, for Narcolepsy and other sleep disorders. Please help us in doing so!
We also are still looking for anybody who would like to help coordinate our social media presence! Contact us if you have any interest!
Seeking a volunteer to establish a social media presence!
As discussed in a previous announcement, the best way to establish our goals of providing community to those suffering from sleep disorders, raise awareness of the disorders, and provide education is to spread the word of this website!
To that end, we are seeking a volunteer to help establish a social media presence on instagram/twitter/facebook/etc. The primary purpose would be just to link back to this website. If you have experience with these websites and would like to devote your time and talents to our Narcolepsy Support Organization administrator team, please contact us!
The site and forums will be down this Saturday from 11PM to 1AM Eastern Daylight Time for routine maintenance. We apologize in advance for any inconvenience.
The best way to help others suffering from sleep disorders is to help them find a community that understands, appreciates, and offers support to them. We are hoping that Narcolepsy Support Organization, through its forum and wonderful users like you, can be that community for people from all over the world, connected through the wonderful internet. We will never charge users to be a part of our forum, will never be in the pocket of any corporation through product promotion, and will never compromise user privacy- we will always strive to be a safe community that offers support, education, and advocates for awareness.
But we need your help if we want to reach those who need our community!
Those suffering from sleep disorders, as well as parents, spouses, and friends of people with sleep disorders who are seeking understanding and guidance, need to know about our website in order to reap its benefits!
How can you help?
- Tell your friends about the website and your experience with it if you’re comfortable! Never underestimate the power of word of mouth.
- Relatedly, share with any Narcolepsy support, advocacy, or education group you may be a part of!
- Upvote our introduction announcement on Reddit if you use it, so others will be more likely to take notice of it!
- Have a good relationship with your sleep disorder doc? Share the website with him or her in case he has any patients searching for a support community.
After 5 days, we’ve got 100 members! And I’m almost certain only a few of those are bots! Let’s keep this train rolling. Thank you to everyone for your support of the website, the forums, and each other!