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