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2016 Top-Rated Nonprofit

Narcolepsy Network, Inc.

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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

30 Stories from Volunteers, Donors & Supporters

Emily157

Client Served

Rating: 5

The Network has been an amazing source of support since I was diagnosed over 10 years ago & it continues to provide new resources & programs that impress me & really make a difference for all PWNs. I always recommend them to anyone I meet who has been newly diagnosed

Previous Stories
2

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!

Board Member

Rating: 5

When I got diagnosed with narcolepsy, I didn't know anything at all about it. I found Narcolepsy Network through Google. I had missed their annual conference that year, but I decided to go the following autumn. I was amazed at how profound it was to meet other people with narcolepsy, having struggled alone with it my whole life.

I haven't missed a conference since. The conferences give me friendships, education, a connection to the researchers who help us, and a way to channel my efforts into focused advocacy. I just can't say enough about how highly I value NN. It brings people in the narcolepsy world together...one of my friendships even hatched into helping launch a separate sleep non-profit, which does different things for our fellow People With Narcolepsy. The Narcolepsy Network truly shapes our community into a Network, connecting PWNs to fellow advocates and researchers. After ten years of having NN enrich my life, I am very happy to be newly serving on the Narcolepsy Network board of directors, excited to help others the way NN has helped me.

Shannon Jeffords B.

General Member of the Public

Rating: 5

When I was diagnosed with narcolepsy in 2010, the doctor basicly told me I had narcolepsy and handed me a brochure for the Narcolepsy Network. It was through the Narcolepsy Network that I learned about my condition and realized what I was facing. The resources available on their website are invaluable to both patients and their support systems. Narcolepsy Network has been instrumental in raising awareness and providing support to those of us living with narcolepsy. I am especially proud of the youth ambassador program and informational products they design and distribute to help advocate for students and people in the workplace. The yearly conventions are a place where you feel normal and empowered by the presence of others facing this rare disease and making life long connections. Thank you for all you do for all of us!

Eveline Honig van V.

Professional with expertise in this field

Rating: 5

I worked as Executive Director for Narcolepsy Network for almost 13 years now. It has been a very rewarding experience. I worked with many different board members and many of these board members put an enormous amount of time, energy and money into this great organization. We accomplished a lot in the last 13 years: we helped many of the fabulous programs grow and started several new programs. Our annual conference is one of our largest programs and we hear from new attendees every year that it has changed their lives in so many positive ways. We are very proud of our new Youth Ambassador program as well and are excited to welcome a whole new group of youth ambassadors again later in the month. We help people improve their lives, we provide education and resources, we raise awareness and we advocate for people with narcolepsy. Narcolepsy Network is the organization to go to for support and education!

Keith H.1

Donor

Rating: 5

Narcolepsy Network is an incredible resource for people with this rare disease (and their friends and family). The network is a huge advocate for issues affecting our community. The annual conference is a fantastic, life-changing experience for many of us. Keep up the great work!

Board Member

Rating: 5

I am a Board member of The Narcolepsy Network. My work has been tremendously awarding. The Network provides vital resources and support to those with Narcolepsy and loved ones with narcolepsy. My daughter was diagnosed with narcolepsy in college. Without the Narcolepsy Network she would not be living a main stream life today. Thank you NN for the fabulous work you do!!

Previous Stories
1

Board Member

Rating: 5

The NN is a fabulous organization that provides tremendous resources and support to this afflicted with narcolepsy. Their annual conference was this past weekend. It was well organized and very informative. The speakers and staff provided the hundreds of attendees with very much needed support and information. Overall, it was a great success!

Louise34

Donor

Rating: 5

My daughter was diagnosed at the age of 15. I have gained so much knowledge and built lasting relationships with so many different people associated with Narcolepsy Network. Well it has been 13 years and I am proud to be part of Narcolepsy Network. I donate numerous times during the year. The Annual Conference is a life changing opportunity for PWN and parents.

Previous Stories
1

Volunteer

Rating: 5

Narcolepsy Network has helped me become educated on what Narcolepsy is and how to help my daughter advance with management of medication and awareness. Thank you NN for guiding me and allowing me to help others.

Mark228

Donor

Rating: 5

When my daughter was diagnosed with narcolepsy and cataplexy, the Narcolepsy Network was the one I turned to learn more about the conditions. Attending their annual conferences have been the events which have led to increased awareness, improved treatments, and acceptance. Thank you NN!

Previous Stories
1

Board Member

Rating: 5

Narcolepsy Network is the 'Go To' organization for patients, families and supporters, and physicians dealing the chronic neurological condition narcolepsy. When my daughter was diagnosed in 2004, the NN annual conference was invaluable is providing me with information to give to her doctor to help with her treatments. I have been involved in the organization since that time and recommend it to all affected people.

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 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.

1

Client Served

Rating: 5

Narcolepsy Network is a great organization that actively supports its members. They are active in offering advice and guidance to set up and run local support groups. NN Also puts on a yearly conference for patients, professionals, and supporters of those with Narcolepsy. The conference is so well run and informative that I try to attend every year.

1

Professional with expertise in this field

Rating: 5

This is an amazing nonprofit that works towards educating the public about a rare disorder. NN puts on a one-of-kind conference that draws renowned narcolepsy doctors and researchers from around the world. NN works hard to break down stereotypes and advocates for a community who often feels invisible.

1

Volunteer

Rating: 5

Years ago I was diagnosed with Narcolepsy. I searched the web and found the link to Narcolepsy Network. From there I joined! It became the best thing I could ever do! I started getting quarterly newsletters. I would read every word - sometimes over and over again. I went to my first conference and it changed my life. Ever since then they have given me support, knowledge, comfort, and made me believe that I AM NOT ALONE!!!!