Neurofibromatosis Incorporated Northeast
- Assets
- $973.5k
- Revenue
- $737.7k
- Investments
- $0.0
- Employees
- 11
- Location
- Burlington, MA
- Founding
- 06/1989
- Data as of
- 12/2021
- EIN
- 04-3013709
Organization Overview
Neurofibromatosis Incorporated Northeast is located in Burlington, MA. The organization was established in 1989. According to its NTEE Classification (G96) the organization is classified as: Neurology & Neuroscience, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Neurofibromatosis Incorporated Northeast employed 11 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Neurofibromatosis Incorporated Northeast 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 12/2021, Neurofibromatosis Incorporated Northeast generated $737.7k in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (0.1%) each year. All expenses for the organization totaled $451.3k during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (6.4%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.
Since 2014, Neurofibromatosis Incorporated Northeast has awarded 18 individual grants totaling $799,000. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
THE MISSION OF NEUROFIBROMATOSIS, INC. NORTHEAST IS TO RAISE FUNDS TO SUPPORT THE RESEARCH OF HTE CAUSES, CURE NAD TREATMENT OF A DISEASE DESCRIBED AS NEUROFIBROMATOSIS, TO PROMOTE AND PROVIDE SUPPORT SERVICES TO PATIENTSS AND THEIR FAMILIES, TO SUPPORT CLINICS DEDICATED TO DIAGNOSIS AND TREATMENT AND TO SUPPORT PROGRAMS INTENDED TO INCREASE AWARENESS OF THE DISEASE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH- SUPPORT AND REASEARCH THROUGH MAKING GRANTS FOR THE STUDY INTO THE CAUSES, CURE AND TREATMENT OF NEUROFIBORMATOSIS.
PATIENT AND FAMILY SUPPORT - NEUROFIBROMATOSIS, INC. NORTHEAST ACTS AS A RESOURCE FOR PATIENTS WHO ARE LOOKING FOR PHYSICIANS AND SPECIALISTS AT THE NF CLINICS. THE ORGANIZATION ENCOURAGES VOLUNTEERISM AT OUR EVENTS WHERE NEUROFIBROMATOSIS PATIENTS CAN MEET OTHERS WHO ARE AFFECTED. THE ORGANIZATION ORGANIZES GATHERINGS OF PATIENTS, FAMILIES AND FRIENDS, WHERE THEY ARE PROVIDED RESEARCH, MEDICAL UPDATES AND SCHOLARSHIPS FOR CHILDREN TO ATTEND NEUROFIBORMATOSIS CAMP.
LOBBYING- NEUROFIBROMATOSIS, INC. NORTHEAST LOBBIED CONGRESS FOR INCREASED FUNDING FOR NEUROFIBROMATOSIS RESEARCH AT BOTH THE NATIONAL INSTITUTE OF HEALTH AND THE ARMY'S NEUROFIBROMATOSIS RESEARCH PROGRAM.
AWARENESS - AS A VEHICLE FOR EDUCATION ABOUTN NEUROFIBROMATOSIS MATTERS TO THE AFFECTED COMMUNITY AS WELL AS THE POPULATION AT LARGE, THE ORGANIZATION PUBLISHES A NEWSLETTER AND BORCHURES, MAINTAINS A WEBSITE AND RUNS OCCATIONAL RADIO SPOTS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Sharon Klein Executive Di | Officer | 40 | $60,099 |
Melissa Shea Malerba Director/ Se | OfficerTrustee | 2 | $0 |
Lori Ryan Chairperson | OfficerTrustee | 2 | $0 |
Robert Ryan Director/tre | OfficerTrustee | 2 | $0 |
Patrick Callahan Director | Trustee | 2 | $0 |
Frank Buono Director | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $213,657 |
| Related organizations | $0 |
| Government grants | $60,000 |
| All other contributions, gifts, grants, and similar amounts not included above | $300,397 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $574,054 |
| Total Program Service Revenue | $0 |
| Investment income | $5,655 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $24,277 |
| Net Income from Fundraising Events | $133,680 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $737,666 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $15,000 |
| 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. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $98,546 |
| Other salaries and wages | $143,044 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $2,456 |
| Payroll taxes | $17,873 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $7,782 |
| 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 | $32,984 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $28,491 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $106 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $445 |
| Insurance | $2,504 |
| All other expenses | $23,796 |
| Total functional expenses | $451,337 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $393,065 |
| Savings and temporary cash investments | $169,560 |
| 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 | $22,192 |
| Net Land, buildings, and equipment | $6,849 |
| Investments—publicly traded securities | $367,546 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $14,300 |
| Other assets | $0 |
| Total assets | $973,512 |
| Accounts payable and accrued expenses | $18,798 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| 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 | $0 |
| Total liabilities | $18,798 |
| Net assets without donor restrictions | $815,828 |
| Net assets with donor restrictions | $138,886 |
| 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 | $973,512 |
Grants Awarded
Over the last fiscal year, Neurofibromatosis Incorporated Northeast has awarded $50,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
West Chester, PA PURPOSE: RESEARCH | $30,000 |
Shrewsbury, MA PURPOSE: RESEARCH | $20,000 |
Grants Recieved
Over the last fiscal year, we have identified 8 grants that Neurofibromatosis Incorporated Northeast has recieved totaling $126,485.
| Awarding Organization | Amount |
|---|---|
Frontstream Global Fund Alexandria, VA PURPOSE: Use by the organization's general fund | $109,718 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $10,159 |
Verizon Foundation Basking Ridge, NJ PURPOSE: MIP PAYOUT FOR 12/09/20 | $2,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $1,108 |
Bay State Federal Savings Charitable Foundation Sagamore Beach, MA PURPOSE: GENERAL OPERATING SUPPORT | $1,000 |
Verizon Foundation Basking Ridge, NJ PURPOSE: MIP PAYOUT FOR 11/03/21 | $1,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Ch Neurology Foundation Inc Boston, MA | $38,253,224 | $41,294,317 |
Brown Neurology Providence, RI | $14,080,281 | $35,504,055 |
Pediatric Development Center Inc Pittsfield, MA | $2,403,383 | $2,341,228 |
Chiari & Syringomyelia Foundation Staten Island, NY | $885,796 | $769,207 |
Neurofibromatosis Incorporated Northeast Burlington, MA | $973,512 | $737,666 |
Kamen Brain Tumor Foundation New York, NY | $194,248 | $33,513 |
Neurosurgery Foundation Inc Providence, RI | $1,745,183 | $151,061 |
International Neurotoxin Association New York, NY | $1,285,490 | $112,611 |
Baby Alex Foundation Inc Harvard, MA | $4,854 | $0 |