PLATINUM2024

Wake Up Narcolepsy, Inc.

From Shadows To Light

Worcester, MA   |  www.wakeupnarcolepsy.org
GuideStar Charity Check

Wake Up Narcolepsy, Inc.

EIN: 26-3768711


Mission

Wake Up Narcolepsy (WUN) is a 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research towards improved treatments and a cure. WUN carries out its mission by providing funding to accelerate a cure for Narcolepsy, increasing awareness of Narcolepsy, decreasing time-lapse from symptom onset to proper diagnosis and providing supportive resources for people with Narcolepsy and their families.

Ruling year info

2009

Co-founder & Executive Director

Monica Gow

Main address

PO Box 60293

Worcester, MA 01606 USA

Show more contact info

EIN

26-3768711

Subject area info

Nonprofits

Health

Diseases and conditions

Population served info

Children and youth

Adults

People with other disabilities

Chronically ill people

NTEE code info

Specifically Named Diseases Research (H80)

Patient Services - Entertainment, Recreation (E86)

Nonmonetary Support N.E.C. (E19)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

On average, it takes 10 years from onset of symptoms to an official diagnosis of Narcolepsy and visits to approximately six different specialists. Prior to diagnosis, it is not uncommon for people to be misdiagnosed with other sleep disorders, depression, psychiatric conditions, ADHD and even epilepsy. Before Wake Up Narcolepsy was founded in 2008, there were no organizations raising funds for Narcolepsy research.

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?

Research Funding

WUN has awarded $1.35 million dollars to Narcolepsy research. We award both restricted and unrestricted grants each year to investigators in the Narcolepsy space.

Population(s) Served
Researchers

Outreach to the public, medical community, educators and people living with Narcolepsy and their families. This includes events like Annual Family Weekend for children/teens with Narcolepsy, National Summit and Brown Bag Webinar Series.

Population(s) Served
Adults
Children and youth
Caregivers
Parents

Provide volunteer opportunities to people living with Narcolepsy, loved ones or people just looking to learn more about the disorder. Spread awareness and education through community events in different areas. Offer connections between people in the community.

Population(s) Served

Nine weekly online support groups for people living with Narcolepsy and their loved ones. Examples of groups include LGBTQIA+, Pregnancy & Parenting, College & Careers, Comorbidities, etc.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Wake Up Narcolepsy (WUN) is dedicated to driving Narcolepsy awareness, education and research towards improved treatments and a cure. This includes decreasing the time-lapse from symptom onset to proper diagnosis.

We accomplish our mission by providing funding to accelerate a cure for Narcolepsy, increasing awareness and education and providing supportive resources for people with Narcolepsy and their families.

Since inception in 2008, Wake Up Narcolepsy has donated $1.35 million to Narcolepsy research. More information about specific research advancements can be found here: https://www.wakeupnarcolepsy.org/research/

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Wake Up Narcolepsy, Inc.
Fiscal year: Jan 01 - Dec 31
Financial documents
2022 2022 - Wake Up Narcolepsy 990 Form 2021 Wake Up Narcolepsy 2020 Wake Up Narcolepsy 2012 2011 2010
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

25.20

Average of 98.36 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

14.1

Average of 11.7 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

8%

Average of 7% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Wake Up Narcolepsy, Inc.

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Wake Up Narcolepsy, Inc.

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Wake Up Narcolepsy, Inc.

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Wake Up Narcolepsy, Inc.’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $81,176 -$78,949 $164,094 $158,206 $36,189
As % of expenses 21.3% -17.5% 56.6% 46.5% 7.2%
Unrestricted surplus (deficit) after depreciation $81,176 -$78,949 $164,094 $158,206 $36,189
As % of expenses 21.3% -17.5% 56.6% 46.5% 7.2%
Revenue composition info
Total revenue (unrestricted & restricted) $462,139 $373,279 $453,917 $498,207 $535,258
Total revenue, % change over prior year 131.8% -19.2% 21.6% 9.8% 7.4%
Program services revenue 3.4% 4.1% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.0% 0.0% 0.0% 0.0% 0.2%
Government grants 0.0% 0.0% 0.0% 2.7% 0.0%
All other grants and contributions 96.6% 95.9% 100.0% 97.3% 99.8%
Other revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $380,963 $452,228 $289,823 $340,001 $499,286
Total expenses, % change over prior year 138.2% 18.7% -35.9% 17.3% 46.8%
Personnel 10.6% 15.1% 23.4% 18.3% 16.7%
Professional fees 18.3% 18.6% 31.8% 25.2% 11.0%
Occupancy 1.0% 0.9% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 39.7% 27.2% 21.7% 39.1% 27.0%
All other expenses 30.3% 38.1% 23.1% 17.5% 45.3%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $380,963 $452,228 $289,823 $340,001 $499,286
One month of savings $31,747 $37,686 $24,152 $28,333 $41,607
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $412,710 $489,914 $313,975 $368,334 $540,893

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 10.6 6.9 17.4 20.9 14.1
Months of cash and investments 10.6 6.9 17.4 20.9 14.1
Months of estimated liquid unrestricted net assets 10.6 6.9 17.5 20.5 14.8
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $335,797 $259,796 $420,669 $591,931 $587,220
Investments $0 $0 $0 $0 $0
Receivables $2,000 $0 $15,000 $5,000 $55,000
Gross land, buildings, equipment (LBE) $2,600 $2,600 $2,600 $2,600 $2,600
Accumulated depreciation (as a % of LBE) 100.0% 100.0% 100.0% 100.0% 100.0%
Liabilities (as a % of assets) 0.2% 0.6% 3.1% 2.7% 4.0%
Unrestricted net assets $337,197 $258,248 $422,342 $580,548 $616,737
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $0 $0 $0
Total net assets $337,197 $258,248 $422,342 $580,548 $616,737

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Co-founder & Executive Director

Monica Gow

Monica holds a Master in Public Administration (MPA) from Clark University and resides in Worcester, Massachusetts, with her husband and three children. In 2008, when her oldest son was diagnosed with Narcolepsy with Cataplexy (NT1), Monica and her husband, David, founded Wake Up Narcolepsy (WUN). She served as Executive Director of WUN for eight years before being appointed to the Board of Directors in October 2016, and then to the position of Board Chair in January 2017. She has supported the growth of WUN from a local grassroots nonprofit organization to a recognized national and international organization offering trusted resources for physicians, people with Narcolepsy, their families and other agencies in the sleep space. Prior to serving the Narcolepsy community, Monica gained many years of work experience in the insurance field and is a certified elementary teacher. Monicas passion will always be to improve the lives of people living with Narcolepsy.

Number of employees

Source: IRS Form 990

Wake Up Narcolepsy, Inc.

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Wake Up Narcolepsy, Inc.

Board of directors
as of 02/09/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Mrs. Mary Beth Guckian

Lynn Grisco

Kevin Guckian

Kimberly Cassidy

David Gow

Kelsey Biddle

Nicole Jeray

Gregg Levethan

Anne Samarawickrama

Prasanna Samarawickrama

Gordon Gow

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/10/2024

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:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data