BRONZE2023

Narcolepsy Network, Inc.

Supporting people with Narcolepsy since 1986

Camas, WA   |  www.narcolepsynetwork.org

Mission

Our mission is to: educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management; 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.

Ruling year info

1990

Board President

Keith Harper

Main address

3242 NE 3rd Ave #1101

Camas, WA 98607 USA

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EIN

22-2762623

NTEE code info

Specifically Named Diseases (G80)

Single Organization Support (E11)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

EDUCATION

Information provided for public, academic, medical and others interested in obtaining information about narcolepsy, its causes, symptoms and treatments.  Creation and distribution of educational brochures and educational materials, assistance to support groups, maintenance of website,  and interactive forum discussions.  Average 5,000 web hits per month.

Population(s) Served
People with diseases and illnesses

Each year 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.

Population(s) Served
People with diseases and illnesses

"THE NETWORK"  is published quarterly, each 14-16  pages, distributed to approximately 1,000 members, donors, professionals, and others.  Some topics included are:  research news coping strategies, personal stories, accommodations in education and employment, legal rights and responsibilities, and disability.

Population(s) Served
People with diseases and illnesses

Attend annual professional meetings to raise awareness of the support and assistance Narcolepsy Network provides to patients with narcolepsy, as well as the materials available for education.  Exhibit at SLEEP and AAN.  Attend twice yearly meetings of the Sleep Disorders Research Advisory Board to stay abreast of current trends in research, treatment, and funding opportunities.  Attend three meetings per year of the National Sleep Awareness Round table to plan and participate in narcolepsy awareness campaigns together with other sleep-related non-profit and governmental health agencies.

Population(s) Served
People with diseases and illnesses

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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Financials

Narcolepsy Network, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Narcolepsy Network, Inc.

Board of directors
as of 03/09/2023
SOURCE: Self-reported by organization
Board chair

Mr. Keith Harper

Niss Ryan

Louise O'Connell

Sharon O'Shaughnessy

Rajeev Sachdeva

Luis Ortiz

Cynthia Zorn

Piper Paul

Carol Arnette

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 5/10/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Gender identity
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data