I am proud to be a member of the Network. It is an invaluable resource for anyone living with or supporting someone with narcolepsy.
I was diagnosed with Narcolepsy almost 20 years ago. I don't remember
how I found the Narcolepsy Network but I am and will always be so grateful that I did!!!
My role for this review is "Client Serviced" . I want to change that to "Client will always be served" Once a PWN joins the NN they become part of a global organization that embraces and welcomes you with open arms into "the family". We are brothers and sisters and we are bonded for life. The connection is unreal....The NN is all about US!!! They share resources, create awareness, fundraise for research, even fight when necessary to protect us. The officers are volunteers
and totally selfless. Thank you NN for having my back, getting me, not judging me, helping me, teaching me and guiding me. I have had my share of challenging moments struggling,feeling all alone and so frightened and terrified but I always found my way back. Always with the help of the Narcolepsy Network THANK YOU❤️...xoxo
This network is an amazing resource for people like myself who suffer from Narcolepsy. The info, support & resources they provide are invaluable as well as the awareness they raise for this misunderstood & under diagnosed condition!
I can see how the Narcolepsy Network conference benefits its attendees each year. They bring the best medical professionals and researchers as well as other speakers to talk about topics that are all beneficial to helping those with narcolepsy. The organization - including the board and staff - really care about the attendees and want to make sure they can have the best experience possible.
Being diagnosed with Narcolepsy can be a scary and disheartening experience. The NN community is helpful in so many ways, and it's great to see and get to know so many people who not only just cope, but excel and succeed in so many facets of life.
Each year the NN conference gets better and better, you can really see the growth of the organization. And they are popping up in the news more and more which is a big benefit not only to those who've had narcolepsy for years, but especially to those recently diagnosed. Their online information for people with narcolepsy has proved valuable for me and my family many times and is a great resource for newly diagnosed patients and their families.
My husband was diagnosed with narcolepsy in 2011 and everything changed for us after that. We thought it was the end of the world with this diagnosis; meaning that he is no longer able to drive long distances anything over 15 minutes, no long trips unless I drive, needing to find a new job that understands that he needs naps everyday, and I'm sure about having a family. 5 years later we have moved closer to family for extra support and help when needed and we now have two beautiful children along with us building a house which he is managing most by himself, and working a full-time job. Narcolepsy has changed our lives but for the better and with the help of this network organization we found support and no longer felt alone. We have met great people through this organization and still keep in touch to this day. Once things settle down with our family I will be getting more actively involved because it made such a difference for our family. Thank you narcolepsy Network for all your support and help!
It is one of the most hard working and creative group of people who work to help PWNs and their families and friends. I am a professional and a board member and I have learnt a lot by coming to their conferences and speaking to the members. The members creativity and intrigue aroused a big research interest amongst professional community recently. It is the narcolepsy network community who raised questions about safety of undergoing anesthesia and sedation, a topic hitherto largely outside the radar of sleep research and anesthesia research. Now leading experts in both specialties are coming together to do more work in this field. Hats off to all the members and board members for facilitating this.
I first found NN on Facebook and then quickly learned that it is an organization of caring people working hard to educate and spread awareness about Narcolepsy... an illness that changed my life 10 years ago and continues to affect me every day. The work they are doing is so important to an otherwise invisible group of people.
I don't know where I would be today without having had Narcolepsy Network in my life for the past six years. Having an "invisible condition" can be difficult, and the isolation of not knowing others who share your condition can make it that much harder to manage. Of the many programs and services it offers, I am most thankful for Narcolepsy Network's wonderful conferences it hosts each year which brings together patients, their supporters, and physicians, for a weekend full of education, awareness, and inspiration.