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2019 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

55 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

I have served on the Board of Directors of Narcolepsy Network for several years now. I love its mission of advocating for and supporting people with narcolepsy. This year, I am especially proud of our Youth Ambassador program, our CONNECT program for younger kids, and the additional online support groups we are fostering since our nationwide in-person supports groups can't meet because of COVID. We are a member-supported organization, and those member dollars help us fund these important outreach programs. Between its members, its leadership, and its staff, Narcolepsy Network does a great job of supporting people with narcolepsy.

Previous Stories

Board Member

Rating: 5

Narcolepsy Network connected me to critical resources when I was first diagnosed with narcolepsy. My first conference was life-changing...meeting other people with narcolepsy for the first time in my life and attending the conference sessions helped me adjust to the diagnosis when I really needed to know I could still be productive and happy despite being thrown such a curve ball. I am so grateful to Narcolepsy Network that I have volunteered for them for many years. Great organization!

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General Member of the Public

Rating: 5

Our son has Narcolepsy, a fairly rare disease. I cannot count the number of times I’ve turned to the Narcolepsy Network for support and information. It is truly invaluable to have a place to go where others understand the experience of having Narcolepsy.

Gabrielle M.3

General Member of the Public

Rating: 5

When my son was diagnosed, this organization was wonderful. Each time I reached out with a question or concern, I received a response. Many times it was a phone call. I was trying to figure out extended testing accommodation for the ACT and SAT and they were extremity helpful. I was put in touch with someone who was very familiar with the process and she helped me through it.

Board Member

Rating: 5

Because our daughter was diagnosed with narcolepsy and cataplexy at age 10, it was suggested by her doctor that we contact Narcolepsy Network for support. For the past 9 years we have been members and supported by Narcolepsy Network with informative and fun conferences, educational newsletters, and most importantly the Youth Ambassador Program that our daughter became involved with at age 15. She has been a spokesperson and advocate around the nation as a Youth Ambassador for the past 4 years. The Youth Ambassador program has given her inspiration, education and empowerment. Narcolepsy Network has provided a comfortable community where our family can flourish.

General Member of the Public

Rating: 5

Narcolepsy Network has allowed me to understand more about my disorder and connected me with other Narcoleptics that I would not have met otherwise. This community has been immensely supportive and helpful in not feeling alone and being proud of who I am and making me comfortable with sharing my story. I’m extremely fortunate and grateful to be apart of their organization as a youth ambassador.

Louise Paiva O.

Board Member

Rating: 5

When my daughter was diagnosed at 15 years old, I contacted Narcolepsy Network to gain information and support. I have been going to their annual conference since 2006. The conference is the staple of this non-profit. I have gained so much knowledge, support as well as friendships.

Client Served

Rating: 5

I was diagnosed with narcolepsy type 1, several years ago and Narcolepsy Network has been a godsend. This organization has provided me with a wealth of resources and information to help me live my best life and advocate for myself.

To me, Narcolepsy Network means empowerment and a supportive community. I've met wonderful people who also have this diagnosis and the most knowledgeable doctors in the country who come to the annual conference and actually spend time connecting with, and educating narcoleptics and their families and friends.

I can't say that I love having narcolepsy, but I do love and appreciate the Narcolepsy Network!

1 Heidi C. H.

Volunteer

Rating: 5

Upon my diagnosis, Narcolepsy Network was the first place I was able to meet another in person with the same diagnosis-- which was life changing. I have been able to obtain information, support, and resources, all while making crucial connections with others. It has been a great source of inspiration, motivation, and empowerment for me. Thank you, Narcolepsy Network!

Volunteer

Rating: 5

The Narcolepsy Network has been a great organization to provide answers and support to my family while we went through the diagnosis of type 1 narcolepsy. As a concerned parent, it was wonderful to know I had a group of individuals who were willing to listen to my concerns and address my family's needs. The Narcolepsy Network has been instrumental in helping me start, and successfully maintain, a narcolepsy support group in my state. I am very appreciative of everything this group has to offer.

Jennifer B.29

Volunteer

Rating: 5

Narcolepsy Network has allowed me to connect with people from across the country who have the same disorder that I do. Before finding NN, it was very difficult to find others who could relate to what I’m going through because of how rare narcolepsy is. I am now a youth ambassador and recently attended the annual conference in New Mexico and had a wonderful time learning and connecting with other narcoleptics.

General Member of the Public

Rating: 5

Narcolepsy Network has dedicated staff and board members who make it their mission to educate the public about narcolepsy, a rare disorder. Every year, nearly 400 narcolepsy patients and their supporters gather for their annual conference. Attendees walk away with the latest updates and knowledge, but also with a sense of feeling understood. Many have said it is truly life-changing.

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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.

Alexander F.1

Client Served

Rating: 5

I am a Youth Ambassador of the Narcolepsy Network and the Narcolepsy Network has helped me in many ways to overcome my Narcolepsy. Thank you

Christine Davidson H.

Client Served

Rating: 5

Narcolepsy Network has helped my family navigate our son's narcolepsy. When he was first diagnosed, we were left feeling lost and confused, until we found Narcolepsy Network! Their annual conferences are amazing! It was wonderful for our son to be able to meet other kids with narcolepsy.

2 Keith H.1

Board Member

Rating: 5

Narcolepsy Network has changed my life—it's an incredible organization dedicated to connecting, educating, and advocating for people with narcolepsy everywhere.

Previous Stories

Board Member

Rating: 5

Narcolepsy Network does an amazing job of connecting, supporting, and empowering people with narcolepsy.

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1 Luis Ortiz

Board Member

Rating: 5

Narcolepsy Network helped me use my skill set and experience to help others with narcolepsy. Its difficult to have Narcolepsy and being able to help others with their own journey with Narcolepsy is truly rewarding. The board is open to new ideas and motivated to do the best for its members.

1

Board Member

Rating: 5

When my daughter was diagnosed with narcolepsy in 2004, I found Narcolepsy Network to be an invaluable source of information to help her and our families. Fourteen years later I am still involved due to their commitment to make things better for those with narcolepsy everywhere!

Client Served

Rating: 5

Narcolepsy network has helped me connect with real people who have the same condition I do. Everyone is very helpful and considerate.

1

General Member of the Public

Rating: 5

I was a senior in high school when I was diagnosed with narcolepsy with cataplexy. I had unknowingly suffered from the disease since fourth grade. Upon diagnosis, I had to come to terms with how much my disease had effected my life. I wasn’t lazy or dramatic I simply had an autoimmune disease. I attended my first narcolepsy network conference shortly after my diagnosis. There I met people who faced the same challenges I did and understood what I was going through. The following year I was chosen to be a youth ambassador for this organization. During that training I met college students that were navigating accomadations as well as the difficult task of becoming individuals despite still needing help with things such as driving, or doctor’s appointments. The Narcolepsy Network has granted me life long friends and tools to deal with everyday struggles. I cannot thank this organization enough for allowing me to not feel alienated by this hurdle in life and for teaching me that I can achieve my goals and succeed in life despite sleeping through a majority of it.

General Member of the Public

Rating: 5

Narcolepsy network has brought awareness to me in understanding how families can support their loved ones with the disease.

Board Member

Rating: 5

I recently joined the Narcolepsy Network as a board member. Since becoming a member, I’ve learned so much about the disease. I have a daughter who is 12 and diagnosed with Narcolepsy around 5 years old. The network provides support, education, and resources which helps to bring clarity in the midst of trying to navigate through what seems like a world of confusion. It’s a great network, I’m excited to be a part of.

General Member of the Public

Rating: 5

The Narcolepsy Network has really been a breath of fresh air. They have provided so much education and insight for me and my family. The amount of support this network provides is valuable beyond words! Thank you!

General Member of the Public

Rating: 5

The Narcolepsy network has helped to education me and my family about the disease. My niece was diagnosed at a really young age. With the networks help, we have become more aware of the disease and how it impacts her life.

Mark228

Board Member

Rating: 5

I have been involved with Narcolepsy Network for over 14 years. The organization continues to be the "go to" source for all things narcolepsy. Their efforts have improved awareness among the medical community and influenced the FDA to expedite new treatments and dosing ranges.

Previous Stories

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!

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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

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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!

Shannon Burkoth

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!

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.

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

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!!!!

1 Attila S.

Professional with expertise in this field

Rating: 5

A familiar network with so much enthusiasm and dedication to help patients with narcolepsy get a better life.

1

General Member of the Public

Rating: 5

We appreciate all the work they do to raise awareness for narcolepsy.

1

Board Member

Rating: 5

Helps people with Narcolepsy and Hypersomnia along with they're supporters.

1 keith_harper

Board Member

Rating: 5

When you join Narcolepsy Network, you're joining a family. The annual conference is an absolutely amazing annual gathering of people with narcolepsy, researchers, advocates, supporters, and friends. I am not being hyperbolic when I say that the conference is a life-changing event. I have never felt so connected to such a large group of people, so quickly, in my entire life.

1

Board Member

Rating: 5

The NN is a fabulous organization that provides tremendous support to those afflicted by narcolepsy. We just returned from our annual conference. It was well organized, had very imformative speakers, provided a wealth of knowledge to those attending and overall was a fabulous event.