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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines

Mission: Narcolepsy Network is a national patient support organization founded in 1986. We are a nonprofit organization that relies on member dues and donations to fund our basic programs. Our primary focus is to: • Educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so they may be empowered to achieve the highest quality of life possible; • Provide emotional support and resources to patients, family members, and friends; • Encourage and assist in the formation of local support groups and other support systems; • Serve as a resource center for patients, medical providers, educators, employers, and members of the public; • Advocate for the interests of all persons with narcolepsy; • Promote early diagnosis, optimal treatment and scientific research; • Increase public awareness of narcolepsy

Target demographics: people with narcolepsy

Geographic areas served: The United States

Programs: Conference: each year narcolepsy network (nn) hosts a conference in a different city, which creates a unique gathering for, support, education, awareness building, and networking among people affected by narcolepsy. A selection of workshops, lectures, support forums, energizers and creative activities are some of the offerings at the conference. Graduate students and professionals in health, education, science and government can get a unique perspective on narcolepsy and the effect it has on individuals and families. In 2014, nn hosted the 29th annual conference in denver, colorado. Nearly 450 people with narcolepsy and their supporters attended from all over the world. The conference offered special programming for children and young adults with narcolepsy as well as sessions on research treatment and advocacy. The annual membership meeting was held at the conference and nn presented awards to two researchers.

public information: information provided for public, academic, medical, and other persons interested in obtaining information about narcolepsy, its causes, symptoms and treatments. Creation and distribution of educational materials and brochures, maintenance of website, interactive forum discussion and social media outreach. Nn's facebook and twitter pages, with more than 6,000 followers, and an active facebook support group with nearly 5,000 members continued to bring narcolepsy news and information to people around the world. Fun awareness events continued, including the new york dream big walk, which had more than 145 walkers raise awareness along the hudson river in new york city. The second annual narcolepsy bed race in virginia also reached more than 60,000 in southwest virginia. Narcolepsy network continued outreach to healthcare providers and educators in 2014, including an initiative to educate medical professionals with two posters that were presented at the sleep 2014 meeting, which is attended, by approximately 5,000 sleep professionals.

newsletter, membership & scholarships: our quarterly newsletter, "the network" is for many people the only source of information about narcolepsy. The newsletter is distributed to the membership as well as many non-member sleep centers and professionals. Each newsletter provides information on diagnosis, effective treatments, resources, updates detailing new narcolepsy research, ideas for coping, personal stories and interviews, industry news, legal and insurance guidance and much more. Approximately 2,000 newsletters are printed quarterly. As part of its mission to provide support to people with narcolepsy, narcolepsy network encourages the formation of support groups. In 2014, that network of groups increased dramatically with 12 new groups starting up in cities across the country. There are now more than 30 active in-person groups in the u. S. Approximately 30 full and partial membership, and 25 conference scholarships were provided to members in need.

Community Stories

22 Stories from Volunteers, Donors & Supporters

Jason131

Volunteer

Rating: 5

I am proud to be a member of the Network. It is an invaluable resource for anyone living with or supporting someone with narcolepsy.

Client Served

Rating: 5

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

2 Emily157

Client Served

Rating: 5

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!

2 Sharokina P.

Advisor

Rating: 5

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.

1

Donor

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Heather282

Volunteer

Rating: 5

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!
-Heather Dudeck

1

Board Member

Rating: 5

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.

1

Volunteer

Rating: 5

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.

1 narcaplexy

Client Served

Rating: 5

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.