Liabilities / Assets
60th percentile
Higher debt load relative to assets than 60% of similar nonprofits.
Narcolepsy Network Inc.
990 • Fiscal year 2019 • EIN 22-2762623
Siviq Scores
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
0.07x
Liabilities / Revenue
60th percentile
Higher debt load relative to revenue than 60% of similar nonprofits.
Net Margin
81st percentile
Higher net margin than 81% of similar nonprofits.
Top Officer Pay
65th percentile
Higher top officer pay than 65% of similar nonprofits.
Top officer pay equals 7.9% of source-year revenue.
Asset Growth
88th percentile
Faster asset growth than 88% of similar nonprofits.
Revenue Growth
79th percentile
Faster revenue growth than 79% of similar nonprofits.
Balance Sheet
Assets
Up$534,942
Up $174,789 (+49%) from 2018
Net Assets
Up$498,326
Up $156,186 (+46%) from 2018
Liabilities
Up$36,616
Up $18,603 (+103%) from 2018
Revenue And Expenses
Revenue
Up$603,529
Up $138,291 (+30%) from 2018
Expenses
Up$447,343
Up $62,471 (+16%) from 2018
Net Income
Up$156,186
Up $75,820 (+94%) from 2018
Historical Trend
Jump To
Filing Snapshot
- Filing Period
- Jan 1, 2019 to Dec 31, 2019
- Signed
- Apr 20, 2020
- Return Version
- 2019v5.0
- Gross Receipts
- $603,529
Mission and Program Overview
Mission
The Network is organized to educate the public about narcolepsy, support individuals with narcolepsy, promote efficient diagnosis, encourage and promote scientific research for cause, treatments, prevention and cure of narcolepsy, provide the formation of Chapters, provide funding through solicitation and fund-raising activities for these purposes.
Narcolepsy Network is dedicated to improving the lives of people with narcolepsy. Goals include: increasing public awareness, advocating and providing education and resources for people with narcolepsy, promoting and supporting narcolepsy and related research.
Balance Sheet Detail
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Savings and Temporary Cash Investments | $175,806 | $269,212 | ▲ $93,406 |
| Cash and Non-Interest-Bearing Accounts | $87,260 | $166,516 | ▲ $79,256 |
| Investments in Publicly Traded Securities | $72,975 | $84,896 | ▲ $11,921 |
| Prepaid Expenses and Deferred Charges | $21,612 | $11,673 | ▼ $9,939 |
| Accounts Receivable | $0 | $145 | ▲ $145 |
| Other Notes and Loans Receivable, Net | $0 | - | - |
| Pledges and Grants Receivable | $0 | - | - |
| Receivable From Disqualified Prsn | $0 | - | - |
| Receivables From Officers Etc | $0 | - | - |
| Investments Other Securities | $0 | - | - |
| Investments Program Related | $0 | - | - |
| Intangible Assets | $0 | - | - |
| Inventories for Sale or Use | $0 | - | - |
| Loans From Officers Directors | $0 | $0 | → $0 |
| Total Assets | $360,153 | $534,942 | ▲ $174,789 |
| Other Assets Total | $2,500 | $2,500 | → $0 |
| Liabilities | |||
| Deferred Revenue | $12,578 | $19,681 | ▲ $7,103 |
| Accounts Payable and Accrued Expenses | $5,435 | $16,935 | ▲ $11,500 |
| Grants Payable | $0 | $0 | → $0 |
| Mortgage Notes Payable Secured by Investment Property | $0 | $0 | → $0 |
| Unsecured Notes Loans Payable | $0 | $0 | → $0 |
| Other Liabilities | $0 | - | - |
| Escrow Account Liability | $0 | $0 | → $0 |
| Tax Exempt Bond Liabilities | $0 | $0 | → $0 |
| Total Liabilities | $18,013 | $36,616 | ▲ $18,603 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $305,714 | $402,134 | ▲ $96,420 |
| Net Assets With Donor Restrictions | $36,426 | $96,192 | ▲ $59,766 |
| Total Net Assets Fund Balance | $342,140 | $498,326 | ▲ $156,186 |
| Total Liabilities and Net Assets / Fund Balance | $360,153 | $534,942 | ▲ $174,789 |
Compensation and Service Providers
Employees
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Eveline V Honig MD MPH | Executive Director | FT | $47,740 | $47,740 |
Board Members and Trustees
| Name | Title |
|---|---|
| Mark Patterson MD PhD | Former President |
| Keith Harper | President |
| Sharon O'Shaughnessy Link | Vice President |
| Cammie Farmer | Trustee |
| Carol Arnette | Trustee |
| Cynthia Zorn | Trustee |
| Luis Ortiz | Trustee |
| Piper Paul | Trustee |
| Niss Ryan | Trustee Emerita |
| Rajeev Sachdeva | Secretary |
| Louise O'Connell | Treasurer |
Revenue and Support
Revenue Composition
- Contributions and Grants
- $474,621
- Program Service Revenue
- $113,257
- Investment Income
- $15,651
- Other Revenue
- $0
- All Other Contributions
- $409,981
- Change in Net Assets
- $156,186
Audited Revenue Reconciliation
- Revenue per Audited Statements
- $603,529
- Revenue Not Reported on Financial Statements
- $0
- Revenue Not Reported on Form 990
- $0
- Other Revenue Adjustments
- $0
- Total Revenue per Audited Statements
- $603,529
- Total Revenue per Form 990
- $603,529
Expenses and Functional Allocation
Major Expense Lines
| Line Item | Amount |
|---|---|
| Other Expenses | $252,152 |
| Salaries, Compensation, and Employee Benefits | $184,147 |
| Total Fundraising Expense | $32,918 |
| Grants and Similar Amounts Paid | $0 |
| Professional Fundraising Fees | $0 |
Functional Expense Allocation
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Conferences and Meetings | $124,671 | $0 | $0 | $124,671 |
| Other Salaries and Wages | $71,465 | $23,900 | $5,196 | $100,561 |
| Current Officers, Directors, Trustees, and Key Employees | $40,622 | $9,867 | $13,678 | $64,167 |
| Fees for Services Other | $37,185 | $0 | $0 | $37,185 |
| Travel | $21,201 | $1,830 | $269 | $23,300 |
| Payroll Taxes | $8,497 | $3,372 | $1,300 | $13,169 |
| Information Technology | $8,946 | $3,200 | $0 | $12,146 |
| Benefits to Members | $11,044 | - | - | $11,044 |
| Fees for Services Accounting | $0 | $7,175 | $0 | $7,175 |
| All Other Expenses | $2,788 | $2,530 | $1,069 | $6,387 |
| Other Employee Benefits | $4,036 | $935 | $1,279 | $6,250 |
| Insurance | $1,436 | $4,285 | $0 | $5,721 |
| Other Expenses | $0 | $2,690 | $0 | $2,690 |
| Fees for Services Legal | $0 | $2,400 | $0 | $2,400 |
| Office Expenses | $995 | $1,206 | $0 | $2,201 |
| Occupancy | $0 | $1,242 | $0 | $1,242 |
| Total Functional Expenses | $349,344 | $65,081 | $32,918 | $447,343 |
Audited Expense Reconciliation
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $447,343 |
| Total Expenses per Audited Statements | $447,343 |
| Total Expenses per Form 990 | $447,343 |
| Expenses Not Reported on Financial Statements | $0 |
| Expenses Not Reported on Form 990 | $0 |
| Other Expense Adjustments | $0 |
Fundraising, Events, and Gaming
- Fundraising activities
- Yes
- Gaming activities
- No
- Professional fundraiser used
- No
Fundraising and Gaming Totals
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
Fundraising Events
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| TSC New York Marathon | $59,396 | $0 | $7,426 | $-7,426 |
| Total Events | $59,396 | $0 | $7,426 | $-7,426 |
Political and Lobbying Activity
- Political campaign activity
- No
- Lobbying activity
- Yes
- Subject to proxy tax
- No
Insider Transactions and Loans
Interested-Person Transactions
| Interested Party | Relationship | Description | Shared Revenue | Amount |
|---|---|---|---|---|
| Melissa Patterson | Daughter of former Board President | Employment | No | $453 |
Loans and Receivables
| Line Item | Beginning | End | Change |
|---|---|---|---|
| Loans from Officers, Directors, Trustees, and Key Employees | $0 | $0 | → $0 |
| Receivables from Disqualified Persons | $0 | - | - |
| Receivables from Officers, Directors, Trustees, and Key Employees | $0 | - | - |
Governance and Compliance
Governance Checklist
- Compiled or reviewed by an accountant
- No
- Annual disclosure for covered persons
- Yes
- Audit committee
- Yes
- Backup withholding compliance
- Yes
- Business relationship with 35% controlled entity
- No
- Business relationship with family members
- Yes
- Business relationship with organization members
- No
- Material changes to governing documents
- No
- Compensation from other sources disclosed
- No
- CEO compensation reviewed
- Yes
- Other officer compensation reviewed
- Yes
- Conflict-of-interest policy
- Yes
- Audited financial statements prepared
- No
- Key decisions subject to board approval
- Yes
- Management duties delegated
- No
Governance Explanations
Form 990, Part VI, Section A, Line 6
“Narcolepsy Network is a membership organization”
Form 990, Part VI, Section A, Line 7A
“Any person who supports the purpose of the corporation may become a member for each calendar year by paying the annual membership dues as required by the bylaws. Only those persons whose dues are current or have been granted complimentary membership shall be eligible to vote at the membership meetings. There shall be no membership certificates of this corporation.”
Form 990, Part VI, Section A, Line 7B
“Any member may attend a membership meeting. Voting privileges shall be extended to any member whose dues are paid by the close of business on the day prior to giving notice of the meeting, which shall be the record date for determining the members entitled to vote at the meeting. Each voting member shall have one (1) vote. Membership standing in the name of a corporation may be voted on by any officer or agent, or by proxy appointed by any of them, unless some other person, by resolution of its board or pursuant to its bylaws, shall be appointed to vote the membership.”
Form 990, Part VI, Section B, Line 11B
“The Board of Trustees shall be called to review the annual Form 990 and accompanying schedules.”
Form 990, Part VI, Section B, Line 12C
“All Board members are provided conflict of interest forms and asked to sign a statement of compliance annually. The President then follows up with each board member by email or phone until they are returned.”
Form 990, Part VI, Section B, Line 15
“The President and Treasurer meet and review performance evaluations in conjunction with reasonable compensation data, such as The NonProfit Times Salary & Benefits Report, to determine appropriate salary levels, annual increases and employee benefits.”
Form 990, Part VI, Section C, Line 19
“The Narcolepsy Network governing documents, including the conflict of interest policy, are available to the public upon request. The financial statements are published in the Narcolepsy Network Annual Report, which is available on the Narcolepsy Network website. Additionally, the bylaws are on the Narcolepsy Network website member's only section and are available upon request.”
Filing and Contact Details
Filer
- Filer Name
- Narcolepsy Network Inc
- EIN
- 22-2762623
- Phone
- 8882926522
- Address
- PO Box 2178, Lynnwood, WA 98036
Signing Officer
- Name
- Keith Harper
- Title
- President
- Phone
- 4016672523
- Signed
- 2020-04-20
Organization Details
- Principal Officer
- Keith Harper
- Formed
- 1986
- Legal Domicile
- Nj
- Voting Board Members
- 8
- Independent Board Members
- 8
- Employees
- 6
- Volunteers
- 75
Supplemental Narrative
Financial Statement Notes
Schedule D, Part III, Line 4
“Maureen D Garnier donated "The Dream," her original watercolor with black and metallic inks. The painting measures 26"x39". "The Dream" may be used in a variety of print images to further awareness of narcolepsy and its symptoms.”
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| IRS990/Desc | 0 | CONFERENCES: 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 2019, NN hosted the annual conference in Albuquerque, NM. Almost 350 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. NN also began hosting One Day Seminars in various cities around the country similar to the Annual Conference but on a smaller scale. The first seminar was held in New York, NY with 80 people in attendance. |
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| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | Keith Harper |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Sharon O'Shaughnessy Link |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | Louise O'Connell |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Rajeev Sachdeva |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Luis Ortiz |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Cynthia Zorn |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | Piper Paul |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | Carol Arnette |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | Cammie Farmer |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | Mark Patterson MD PhD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | Niss Ryan |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | Eveline V Honig MD MPH |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 47740 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | President |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | Vice President |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | Treasurer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Secretary |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | Former President |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | Trustee Emerita |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | Executive Director |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 1986 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 1 |
| IRS990/FundraisingAmt | 0 | 59396 |
| IRS990/GainOrLossGrp/OtherAmt | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | 0 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 8 |
| IRS990/GovernmentGrantsAmt | 0 | 0 |
| IRS990/GrantAmt | 0 | 0 |
| IRS990/GrantsPayableGrp/BOYAmt | 0 | 0 |
| IRS990/GrantsPayableGrp/EOYAmt | 0 | 0 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 0 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 0 |
| IRS990/GrantsToIndividualsInd | 0 | 0 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 603529 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IncmFromInvestBondProceedsGrp/ExclusionAmt | 0 | 0 |
| IRS990/IncmFromInvestBondProceedsGrp/RelatedOrExemptFuncIncomeAmt | 0 | 0 |
| IRS990/IncmFromInvestBondProceedsGrp/TotalRevenueColumnAmt | 0 | 0 |
| IRS990/IncmFromInvestBondProceedsGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 8 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 0 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 3200 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 8946 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 12146 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 0 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 4285 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 1436 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 5721 |
| IRS990/IntangibleAssetsGrp/BOYAmt | 0 | 0 |
| IRS990/InterestGrp/FundraisingAmt | 0 | 0 |
| IRS990/InterestGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/InterestGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/InterestGrp/TotalAmt | 0 | 0 |
| IRS990/InventoriesForSaleOrUseGrp/BOYAmt | 0 | 0 |
| IRS990/InvestmentExpenseAmt | 0 | 0 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 0 |
| IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt | 0 | 15651 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 15651 |
| IRS990/InvestmentIncomeGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/InvestmentsOtherSecuritiesGrp/BOYAmt | 0 | 0 |
| IRS990/InvestmentsProgramRelatedGrp/BOYAmt | 0 | 0 |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 72975 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 84896 |
| IRS990/IRPDocumentCnt | 0 | 3 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | NJ |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LoansFromOfficersDirectorsGrp/BOYAmt | 0 | 0 |
| IRS990/LoansFromOfficersDirectorsGrp/EOYAmt | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 1 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembershipDuesAmt | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 1 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | The purposes for which the corporation is organized are: educate the public about narcolepsy, support individuals with narcolepsy, promote efficient diagnosis, encourage and promote scientific research for cause, treatments, prevention and cure of narcolepsy, provide for the formation of Chapters, provide funding through solicitation and fund-raising activities for the above-mentioned purposes. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/MortgNotesPyblScrdInvstPropGrp/BOYAmt | 0 | 0 |
| IRS990/MortgNotesPyblScrdInvstPropGrp/EOYAmt | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 342140 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 498326 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 0 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 305714 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 402134 |
| IRS990/NoncashContributionsAmt | 0 | 5466 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 0 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 1242 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 1242 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 0 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 1206 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 995 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 2201 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 2500 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 2500 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 1279 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 935 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 4036 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 6250 |
| IRS990/OtherExpensesGrp/Desc | 0 | Printing & Publications |
| IRS990/OtherExpensesGrp/Desc | 1 | Fundraising Event Expenses |
| IRS990/OtherExpensesGrp/Desc | 2 | Bank, Payroll, CC Fees |
| IRS990/OtherExpensesGrp/Desc | 3 | State Registration Fees |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 933 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 7426 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 1768 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 3 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 184 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 265 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 2690 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 11622 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 0 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 4836 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 0 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 12739 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 7426 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 6869 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 2690 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 0 |
| IRS990/OtherRevenueTotalAmt | 0 | 0 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 5196 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 23900 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 71465 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 100561 |
| IRS990/OthNotesLoansReceivableNetGrp/BOYAmt | 0 | 0 |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PaymentsToAffiliatesGrp/FundraisingAmt | 0 | 0 |
| IRS990/PaymentsToAffiliatesGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/PaymentsToAffiliatesGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/PaymentsToAffiliatesGrp/TotalAmt | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 1300 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 3372 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 8497 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 13169 |
| IRS990/PensionPlanContributionsGrp/FundraisingAmt | 0 | 0 |
| IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/PensionPlanContributionsGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/PensionPlanContributionsGrp/TotalAmt | 0 | 0 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 0 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 21612 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 11673 |
| IRS990/PrincipalOfficerNm | 0 | Keith Harper |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | 0 |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 900099 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 1 | 900099 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 2 | 900099 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 3 | 900099 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | Annual Conference |
| IRS990/ProgramServiceRevenueGrp/Desc | 1 | Membership Dues |
| IRS990/ProgramServiceRevenueGrp/Desc | 2 | Rare Disease Week |
| IRS990/ProgramServiceRevenueGrp/Desc | 3 | Consulting/Publication sales |
| IRS990/ProgramServiceRevenueGrp/ExclusionAmt | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/ExclusionAmt | 1 | 0 |
| IRS990/ProgramServiceRevenueGrp/ExclusionAmt | 2 | 0 |
| IRS990/ProgramServiceRevenueGrp/ExclusionAmt | 3 | 0 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 72908 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 1 | 36734 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 2 | 1600 |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 3 | 2015 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 72908 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 1 | 36734 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 2 | 1600 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 3 | 2015 |
| IRS990/ProgramServiceRevenueGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/UnrelatedBusinessRevenueAmt | 1 | 0 |
Document Assets
No mirrored PDF or thumbnail assets are attached yet.
Filings
Displayed year
2019 • Form 990Detailed filing. Detailed filing data is available for this year.
- Assets
- $534,942
- Liabilities
- $36,616
- Net assets
- $498,326
- Revenue
- $603,529
- Expenses
- $447,343
- Net income
- $156,186