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Wake Up Narcolepsy, Inc.

 PO Box 60293
 Worcester, MA 01606
[P] (978) 751-3693
[F] --
www.wakeupnarcolepsy.org
info@wakeupnarcolepsy.org
Kathi Wagner
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INCORPORATED: 2008
 Printable Profile (Summary / Full)
EIN 26-3768711

LAST UPDATED: 01/04/2019
Organization DBA --
Former Names --
Organization received a competitive grant from the Boston Foundation in the past five years No

Summary

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Mission StatementMORE »

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find 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. Providing supportive resources for people with narcolepsy and their families.

Mission Statement

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find 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. Providing supportive resources for people with narcolepsy and their families.

FinancialsMORE »

Fiscal Year Jan 01, 2014 to Dec 31, 2014
Projected Income $762,000.00
Projected Expense $677,000.00

ProgramsMORE »

  • Public Education and Awareness
  • Research Funding

Revenue vs. Expense ($000s)

Expense Breakdown 2012 (%)

Expense Breakdown 2011 (%)

Expense Breakdown 2010 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview

Mission Statement

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find 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. Providing supportive resources for people with narcolepsy and their families.

Background Statement

Upon recognizing the great need to raise awareness and research funds for narcolepsy, Kevin Cosgrove teamed up with Monica and David Gow to establish Wake Up Narcolepsy, Inc., in 2008.

Wake Up Narcolepsy has quickly become a national leader for narcolepsy research and awareness. We are dedicated to funding research into the causes, prevention, treatments and a cure for narcolepsy while increasing awareness among the public and medical professionals. Narcolepsy is a chronic sleep disorder that affects the brain’s inability to properly regulate sleep-wake cycles. More than 200,000 Americans and 3 million people worldwide are living with narcolepsy. It is estimated that 1 in 2,000 people are diagnosed with the disorder, but experts believe that narcolepsy is severely under-recognized or misdiagnosed. In the U.S., it is not uncommon for six or more years to pass between initial onset and proper diagnosis, largely because the disease is so poorly understood, even within the medical community.

Narcolepsy most often presents itself between the ages of 11 and 17, but children as young as 3 have been diagnosed. The disorder affects males and females, and all socio- economic strata equally. Narcolepsy is not caused a mental illness or psychological problem. It most likely results from a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger, such as a virus. Narcolepsy’s effect on quality of life compares to Parkinson’s disease and epilepsy, yet fewer than 10% of Americans can accurately identify any symptoms of narcolepsy.

The five most common symptoms affecting people with narcolepsy are:

Excessive daytime sleepiness
Cataplexy – brief but sudden episodes of muscle weakness triggered by strong emotion.
Hypnagogic and hypnopompic hallucinations – auditory, visual, or tactile hallucinations that are experienced while falling asleep or waking up. 
Sleep paralysis – the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes during which time one is unable to move.

Impact Statement

2013 Accomplishments
1) Attended an FDA meeting with nearly 150 narcolepsy patients, family members, and other stakeholders on September 24, 2013. Most of the attendees had been mobilized through Unite Narcolepsy (UN), an initiative of Wake Up Narcolepsy. UN's activities included the first-ever survey to explore what it's like living with the disorder, and the effectiveness of current therapies. More than 2,000 completed the survey - unprecedented for a rare disease - and the findings were presented to the FDA.
The FDA hosted the meeting, the fourth of the agency's Patient Focused Drug Development Initiative, to gather input from narcolepsy stakeholders. Input of this kind helps the FDA's review of applications for new drugs in certain disease areas. This procedure is particularly important for diseases, such as narcolepsy, for which the agency does not fully understand the impact of a disease on patients. 
It was the FDA's first meeting to address a rare disease, and it broke previous participation records, giving narcolepsy a major spotlight before a large audience that included FDA reviewers, pharmaceutical company representatives, reporters, researchers, advocacy organization leaders, and other government representatives.
 
2) Reached a milestone by surpassing the $250,000 mark towards research funded since the organization's inception.
 
3) Hired the organization's first full-time salaried employee to focus on expanding fundraising efforts.
 
2014 Goals
1) Purchase new database to track donations and relationships more effectively
 
2) Update Strategic Plan, Education Plan, Communications Plan and Fundraising Plans
 
3) Expand number of fundraising events held nationally
 
4) Recruit additional board members and committee volunteers
 
5) Aggressively pursue new funding sources including corporate and foundation grants and sponsorships
 

Needs Statement

1) Need additional leadership and program volunteers
2) Must diversify funding sources
3) Striving to reduce administrative and fundraising costs
4) Working to increase program services and educational outreach
5) Achieve measureable and quantifiable results related to program services

CEO Statement

November 2013 marks the fifth anniversary of Wake Up Narcolepsy! In this brief span of time, we're proud to report that we have become a prominent force in speeding narcolepsy diagnosis through greater awareness. And we have donated more than $250,000 in badly needed funding to the world's leading narcolepsy research institutes. We remain the only US non profit organization dedicated to funding narcolepsy research.
Not long after our then 10-year-old son was diagnosed, Dave and I teamed up with our Kevin Cosgrove, of Boston, who has narcolepsy. Naturally we all sought as much information on the disorder as we could find. We quickly discovered, however, that there was a limited amount of help and information available. If we were finding little support, we reasoned, countless others must be experiencing the same dilemma.

The product of our shock and sense of activism led to the creation of Wake Up Narcolepsy. As Kevin said at our founding, "People with narcolepsy have been living in the shadows. It's time to step into the light."

This light has brightened over the years, and our mission is gathering momentum as never before. But rather than put into words what we have achieved, we invite you to view this video overview: We at Wake Up Narcolepsy continue to be deeply grateful for your dedicated support. Together, we are accelerating narcolepsy diagnosis through greater awareness, and providing much-needed funding for medical research to prevent and cure this devastating disease. It is a journey near and dear to the hearts of everyone involved. 

Thank you so much! 

Board Chair Statement

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Geographic Area Served

National
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Organization Categories

  1. Medical Research - Specifically Named Diseases Research
  2. Health Care - Patient & Family Support
  3. Health Care - Support NEC

Independent research has been conducted on this organization's theory of change or on the effectiveness of this organization's program(s)

No

Programs

Public Education and Awareness

Reaching out to the public, medical community, educators and people living with narcolepsy and their families.
Budget  200,000
Category  Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served US Adults K-12 (5-19 years)
Program Short-Term Success 
Reduce stigma, acceptance, awareness.
Program Long-Term Success 
Reduce average diagnosis time of 6 years.
Program Success Monitored By 
Surveys
Examples of Program Success 
Five years ago, diagnosis time was 10 years, it has now been reduced to six years.

Research Funding

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Budget  --
Category  Diseases, Disorders & Medical Disciplines, General/Other
Population Served Adults Children and Youth (infants - 19 years.) None
Program Short-Term Success  --
Program Long-Term Success  --
Program Success Monitored By  --
Examples of Program Success  --

CEO/Executive Director/Board Comments

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Management


CEO/Executive Director Mr. Monica Gow
CEO Term Start Jan 2013
CEO Email mgow@wakeupnarcolepsy.org
CEO Experience

Monica Gow, Executive Director & Co-founder, oversees strategic and day-to-day implementation of the WUN mission. She has 10 years of experience in the insurance field, is a certified elementary school teacher, and is the mother of three children. Monica and her husband, David, were motivated to bring awareness and education to the narcolepsy community when their son was diagnosed in 2008. In 2010, 2011 and 2012, Monica, who resides in Worcester, MA, led the Wake Up Narcolepsy Boston Marathon team, running with speed and dedication, and raising remarkable awareness and research funds.

Co-CEO --
Co-CEO Term Start --
Co-CEO Email --
Co-CEO Experience --

Former CEOs and Terms

Name Start End
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Senior Staff

Name Title Experience/Biography
Mr. Ken McDonnell Communications Director

Kenneth McDonnell, Communications Director, brings to the post over 30 years of expertise in marketing, corporate communications, and media relations. Ken’s background includes work in social services, higher education, computer technology, and electric energy. Ken is a member of BNI Holden, MA Golden Givers Chapter, a volunteer with Wachusett Greenways, and serves on the Jewish Family Service of Worcester Board of Directors. His interests include scuba diving and competing in triathalons.

Mrs. Kathi L Wagner Chief Development Director

Kathi Wagner, Chief Development Director, works remotely from the Chicago area and oversees WUN’s strategic fundraising and other philanthropic initiatives, including grant writing, major donor and planned giving programs, direct mail outreach, event support, and stewardship activities, as well as national volunteer leadership recruitment, and database and policy development. Kathi has more than 20 years of fundraising, marketing, public affairs, and non-profit management experience in healthcare, social service and environmental organizations.

Awards

Award Awarding Organization Year
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Affiliations

Affiliation Year
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Member of state association of nonprofits? No
Name of state association --

External Assessments and Accreditations

External Assessment or Accreditation Year
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Collaborations

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CEO/Executive Director/Board Comments

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Foundation Comments

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Staff Information

Number of Full Time Staff 1
Number of Part Time Staff 0
Number of Volunteers 10
Number of Contract Staff 1
Staff Retention Rate % 100%

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 100
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 2
Male: 1
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Under Development
Organization has Strategic Plan? Under Development
Years Strategic Plan Considers 3
Management Succession Plan No
Business Continuity of Operations Plan No
Organization Policies And Procedures No
Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy No
Directors and Officers Insurance Policy Yes
State Charitable Solicitations Permit Yes
State Registration Yes

Risk Management Provisions

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Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency Yes Annually
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Governance


Board Chair Mr. Gordon Gow
Board Chair Company Affiliation Gordon W. Gow and Associates
Board Chair Term Jan 2014 -
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
Mr. Kevin Cosgrove Castle Biosciences Voting
Mr. Ray De Rise Attorney Voting
Mrs. Laura Fabrizio Troy Abstract and Title Agency Voting
Ms. Julie Frasher Corporate Workplace Strategist Voting
David Gow -- Voting
Mrs. Monica Gow Wake Up Narcolepsy Executive Director NonVoting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Advisory Board Members

Name Company Affiliations Status
Dr. Kelly Carden MD Sleep Medicine of Middle Tennessee NonVoting
Dr. Emmanuel Mignot MD, PhD Stanford University School of Medicine NonVoting
Dr. Indra Narang MD Hospital for Sick Children NonVoting
Dr. Thomas Scammell MD Harvard Medical School NonVoting

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 100
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): --
Gender Female: 3
Male: 3
Not Specified 0

Board Information

Board Term Lengths 3
Board Term Limits --
Board Meeting Attendance % --
Written Board Selection Criteria Under Development
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 100%
Percentage of In-Kind Contributions --
Constituency Includes Client Representation Yes

Standing Committees

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CEO/Executive Director/Board Comments

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Foundation Comments

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Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2012 (%)

Expense Breakdown 2011 (%)

Expense Breakdown 2010 (%)

Fiscal Year Jan 01, 2014 to Dec 31, 2014
Projected Income $762,000.00
Projected Expense $677,000.00
Form 990s

2012 Form 990

2011 Form 990

2010 Form 990

Audit Documents

2012 Review

IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2012 2011 2010
Total Revenue $303,876 $65,678 $45,459
Total Expenses $166,176 $69,438 $31,039

Prior Three Years Revenue Sources

Fiscal Year 2012 2011 2010
Foundation and
Corporation Contributions
$202,300 $25,000 --
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- --
Individual Contributions $39,159 $54,049 $33,196
Indirect Public Support -- -- --
Earned Revenue $11,849 -- --
Investment Income, Net of Losses -- -- --
Membership Dues -- -- --
Special Events $50,568 $-13,371 $12,263
Revenue In-Kind -- -- --
Other -- -- --

Prior Three Years Expense Allocations

Fiscal Year 2012 2011 2010
Program Expense $119,024 $54,421 $25,325
Administration Expense $39,410 $15,017 $5,714
Fundraising Expense $7,742 -- --
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 1.83 0.95 1.46
Program Expense/Total Expenses 72% 78% 82%
Fundraising Expense/Contributed Revenue 3% 0% 0%

Prior Three Years Assets and Liabilities

Fiscal Year 2012 2011 2010
Total Assets $157,748 $20,048 $23,808
Current Assets $156,999 $18,800 $21,728
Long-Term Liabilities $0 $0 $0
Current Liabilities $0 $0 $0
Total Net Assets $157,748 $20,048 $23,808

Prior Three Years Top Three Funding Sources

Fiscal Year 2012 2011 2010
1st (Source and Amount) -- --
-- --
-- --
2nd (Source and Amount) -- --
-- --
-- --
3rd (Source and Amount) -- --
-- --
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Financial Planning

Endowment Value --
Spending Policy Income Only
Percentage(If selected) --
Credit Line No
Reserve Fund Yes
How many months does reserve cover? 3.00

Capital Campaign

Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? --

Short Term Solvency

Fiscal Year 2012 2011 2010
Current Ratio: Current Assets/Current Liabilities inf inf inf

Long Term Solvency

Fiscal Year 2012 2011 2010
Long-term Liabilities/Total Assets 0% 0% 0%

CEO/Executive Director/Board Comments

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Foundation Comments

Financial summary data in charts and graphs are per the organization's IRS Form 990s. Contributions from foundations and corporations are listed under individuals when the breakout was not available.

Documents


Other Documents

No Other Documents currently available.

Impact

The Impact tab is a section on the Giving Common added in October 2013; as such the majority of nonprofits have not yet had the chance to complete this voluntary section. The purpose of the Impact section is to ask five deceptively simple questions that require reflection and promote communication about what really matters – results. The goal is to encourage strategic thinking about how a nonprofit will achieve its goals. The following Impact questions are being completed by nonprofits slowly, thoughtfully and at the right time for their respective organizations to ensure the most accurate information possible.


1. What is your organization aiming to accomplish?

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2. What are your strategies for making this happen?

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3. What are your organization’s capabilities for doing this?

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4. How will your organization know if you are making progress?

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5. What have and haven’t you accomplished so far?

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