Nbia Disorders Association
- Assets
- $846.7k
- Revenue
- $276.4k
- Investments
- $0.0
- Employees
- 2
- Location
- El Cajon, CA
- Founding
- 02/1997
- Data as of
- 09/2022
- EIN
- 33-0712327
Organization Overview
Nbia Disorders Association is located in El Cajon, CA. The organization was established in 1997. According to its NTEE Classification (H03) the organization is classified as: Professional Societies & Associations, under the broad grouping of Medical Research and related organizations. As of 09/2022, Nbia Disorders Association employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Nbia Disorders Association is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 09/2022, Nbia Disorders Association generated $276.4k in total revenue. This represents a relatively dramatic decline in revenue. Over the past 7 years, the organization has seen revenues fall by an average of (5.5%) each year. All expenses for the organization totaled $267.6k during the year ending 09/2022. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
IN OUR DRIVE TO FIND A CURE FOR NBIA, WE PROVIDE SUPPORT TO FAMILIES, EDUCATE THE PUBLIC AND ACCELERATE RESEARCH WITH COLLABORATORS FROM AROUND THE WORLD.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH THE ASSOCIATION RAISES MONEY TO FUND GRANTS & CLINICAL PROJECTS FOR SCIENTIFIC AND MEDICAL RESEARCH TO ASSIST IN FINDING A CURE FOR NBIA DISORDERS. IN THIS YEAR, $120,065 WAS RAISED FOR RESEARCH. THIS YEAR THE ASSOCIATION AWARDED THREE NBIA RESEARCH GRANTS TOTALING $116,989. ADDITIONALLY, THE ASSOCIATION PARTICIPATES IN HOLDING INTERNATIONAL SCIENTIFIC SYMPOSIA EVERY TWO TO THREE YEARS. THE SYMPOSIUM PROVIDES A FORUM FOR RESEARCHERS TO SHARE INFORMATION AND COMMON INTERESTS, LAYING THE GROUNDWORK FOR POTENTIAL COLLABORATIONS IN THE FUTURE. THE EIGHTH INTERNATIONAL SCIENTIFIC SYMPOSIUM WAS HELD FROM OCTOBER 13TH TO 15TH, 2022 IN LAUSANNE SWITZERLAND. THE NINTH SYMPOSIUM WILL BE HELD IN 2024 IN A LOCATION TO BE DETERMINED.
EDUCATION & SUPPORTTHIS PROGRAM ENCOMPASSES MANY AREAS OF WORK BY THE ORGANIZATION: THE ASSOCIATION PUBLISHES A FREE NEWSLETTER, ABOUT THREE TIMES PER YEAR. THE NEWSLETTER PROMOTES AWARENESS OF NBIA, EDUCATES THE PUBLIC AND MEDICAL COMMUNITY ABOUT THESE RARE DISORDERS, SUPPORTS AFFECTED FAMILIES, AND DISSEMINATES INFORMATION ON NBIA RESEARCH AND TREATMENTS. FAMILY CONFERENCES ARE HELD EVERY TWO TO THREE YEARS. CONFERENCES PROVIDE A FORUM FOR NBIA-AFFECTED FAMILIES FROM AROUND THE WORLD TO NETWORK, RECEIVE INFORMATION ABOUT RESEARCH AND TREATMENTS, SHARE INFORMATION, AND SUPPORT EACH OTHER. THE 12TH INTERNATIONAL FAMILY CONFERENCE WILL BE HELD MAY 18TH - 21ST, 2023 IN HOUSTON, TEXAS. ALSO, THE ASSOCIATION RESPONDS TO GENERAL EMAILS FROM NBIA FAMILIES, FROM THE PUBLIC, AND OTHERS IN ADDITION TO ALL DISSEMINATION ACTIVITIES. THE ASSOCIATION MAINTAINS A WEB PRESENCE AT WWW.NBIADISORDERS.ORG WHICH PROVIDES A DATABASE OF CURRENT, ACCURATE INFORMATION ON NBIA. THE ASSOCIATION ALSO HOLDS VIRTUAL WEBINARS ON TOPICS OF INTEREST THROUGHOUT THE YEAR AND HAS RECENTLY STARTED ZOOM SUPPORT GROUP MEETINGS FOR NBIA FAMILIES. THE ASSOCIATION HAS A NETWORKING PROGRAM, A FACEBOOK GROUP & FACEBOOK CAUSE PAGE, IS ON TWITTER, INSTAGRAM AND LINKED-IN, HAS MULTIPLE VIDEOS POSTED ON AN NBIA YOU-TUBE CHANNEL, AND HAS A SOCIAL MEDIA DIRECTOR. THESE ALL PROVIDE A FORUM FOR AFFECTED INDIVIDUALS, THEIR FAMILIES, CAREGIVERS AND OTHERS AFFECTED BY SOMEONE LIVING WITH NBIA TO RECEIVE EMOTIONAL SUPPORT AND TO SHARE INFORMATION. THESE FUNCTIONS ALSO HELP PROMOTE AWARENESS AND EDUCATE THE PUBLIC AND THE MEDICAL COMMUNITY ABOUT NBIA DISORDERS. THIS YEAR THE ASSOOCIATION AWARDED A CONTRACT TO OREGON HEALTH & SCIENCE UNIVERSITY FOR A PLAN BEST PRACTICES DOCUMENT.
NBIA ALLIANCETHE ASSOCIATION IS ACTING AS FISCAL AGENT FOR THE NBIA ALLIANCE. THE ALLIANCE IS AN UMBRELLA ORGANIZATION FOR NBIA PATIENT ADVOCACY NON-PROFIT ASSOCIATIONS IN TEN COUNTRIES. THE ALLIANCE WORKS TO FURTHER NBIA RESEARCH AND HELPS TO MAINTAIN AN INTERNATIONAL PATIENT REGISTRY AND BIOBANK.
Get More from Intellispect for FreeCreate a free account to get more data, nonprofit salaries, advanced search and more.
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Patricia V Wood President | Officer | 40 | $53,733 |
Amber Denton Vice President | OfficerTrustee | 2 | $0 |
Richard Tifone Treasurer | Officer | 3 | $0 |
Mary Tapke Secretary | Officer | 2 | $0 |
Jennifer Wildvank Trustee | Trustee | 2 | $0 |
Jeff Gartman Trustee | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $276,079 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $276,079 |
| Total Program Service Revenue | $0 |
| Investment income | $310 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $276,389 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $104,699 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $57,200 |
| Compensation of current officers, directors, key employees. | $11,150 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $22,866 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $4,440 |
| Payroll taxes | $6,363 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $7,500 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $0 |
| Advertising and promotion | $0 |
| Office expenses | $0 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $723 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $145 |
| Insurance | $2,661 |
| All other expenses | $11,037 |
| Total functional expenses | $267,629 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $840,224 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $6,219 |
| Net Land, buildings, and equipment | $219 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1 |
| Total assets | $846,663 |
| Accounts payable and accrued expenses | $851 |
| Grants payable | $140,000 |
| Deferred revenue | $10,522 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $36,744 |
| Total liabilities | $188,117 |
| Net assets without donor restrictions | $427,776 |
| Net assets with donor restrictions | $230,770 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $846,663 |
Grants Awarded
Over the last fiscal year, Nbia Disorders Association has awarded $111,894 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
OREGON HEALTH & SCIENCE UNIV PURPOSE: MEDICAL RESEARCH | $103,292 |
Philadelphia, PA PURPOSE: MEDICAL RESEARCH | $8,602 |
Grants Recieved
Over the last fiscal year, we have identified 4 grants that Nbia Disorders Association has recieved totaling $3,568.
| Awarding Organization | Amount |
|---|---|
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $2,368 |
Bank Of America Charitable Foundation Inc Charlotte, NC PURPOSE: OPERATIONAL SUPPORT | $500 |
Bank Of America Charitable Foundation Inc Charlotte, NC PURPOSE: OPERATIONAL SUPPORT | $500 |
Norman R Tyre & Margery C Tyre Foundation Calabasas, CA PURPOSE: UNRESTRICTED | $200 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Association Of Enterprise Architects San Francisco, CA | $40,971 | $288,257 |
International Brain Mapping And Intra-Operative Surgical Planning Pacific Palisades, CA | $2,133 | $272,151 |
Nbia Disorders Association El Cajon, CA | $846,663 | $276,389 |
Society Of Metabolic Health Practitioners Inc San Diego, CA | $74,308 | $0 |
Arizona Infectious Deseases Society Scottsdale, AZ | $77,015 | $76,880 |
Institute For Identity Development Los Angeles, CA | $54,586 | $0 |
Pubpeer Foundation San Francisco, CA | $74,556 | $0 |
Korean Community Lawyersassociation Los Angeles, CA | $30,790 | $0 |
International Working Group On Taxonomic Databases San Francisco, CA | $253,066 | $0 |
Foundation For Radiologist Education And Science At Harbor Long Beach, CA | $1,564,585 | $50,085 |
United Ostomy Association Of America Inc Pleasant Hill, CA | $0 | $0 |