Asxl Rare Research Endowment Foundation
- Assets
- $616.1k
- Revenue
- $286.1k
- Investments
- $0.0
- Employees
- 1
- Location
- Falmouth, ME
- Founding
- 05/2018
- Data as of
- 12/2021
- EIN
- 82-3890665
Organization Overview
Asxl Rare Research Endowment Foundation is located in Falmouth, ME. The organization was established in 2018. According to its NTEE Classification (H12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Medical Research and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Asxl Rare Research Endowment Foundation 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, Asxl Rare Research Endowment Foundation generated $286.1k in total revenue. This represents a relatively dramatic decline in revenue. Over the past 3 years, the organization has seen revenues fall by an average of (31.7%) each year. All expenses for the organization totaled $285.0k during the year ending 12/2021. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
A FAMILY-LED ORGANIZATION THAT SUPPORTS RESEARCH TO INCREASE THE UNDERSTANDING OF THE ASXL GENE FAMILY AND IMPROVE CARE FOR THOSE LIVING WITH ASXL SYNDROMES
Describe the Organization's Program Activity:
Part 3 - Line 4a
ASXL REGISTRY AND BIOBANK. THESE ARE FOUNDATIONAL TOOLS BASED ON PATIENT DATA & SAMPLES WHICH RESEARCHERS WILL UTILIZE TO STUDY AND INCREASE OUR KNOWLEDGE OF ASXL SYNDROMES
RESEARCH GRANTS. EFFECTIVE RESEARCH WILL BRING AN UNDERSTANDING OF THE UNDERLYING MECHANISMS AND POTENTIAL TREATMENTS FOR ASXL SYNDROMES
CONFERENCES. MEETINGS TO BRING TOGETHER PROFESSIONALS AND FAMILIES TO SHARE INFORMATION AND EXCHANGE IDEAS TO FURTHER OUR MISSION.
CREATE AND PROVIDE PATIENT AND FAMILY EDUCATIONAL RESOURCES
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PDF Copies of 990 Filings
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Amanda Johnson Chief Development Officer | Officer | 40 | $100,000 |
Daniel Ordower Treasurer | OfficerTrustee | 2 | $0 |
Dr Bianca Russell Director | Trustee | 2 | $0 |
Melissa Farmer Richards Director | Trustee | 2 | $0 |
Laura Badmaev President | Trustee | 2 | $0 |
Michael Salad Director | 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 | $285,640 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $285,640 |
| Total Program Service Revenue | $0 |
| Investment income | $453 |
| 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 | $286,093 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $55,000 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $108,900 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $100,000 |
| Compensation of current officers, directors, key employees. | $30,000 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $7,650 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $3,932 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $496 |
| Fees for services: Other | $0 |
| Advertising and promotion | $2,426 |
| Office expenses | $1,820 |
| Information technology | $3,140 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| 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 | $0 |
| Insurance | $1,136 |
| All other expenses | $0 |
| Total functional expenses | $284,960 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $244,563 |
| Savings and temporary cash investments | $364,755 |
| Pledges and grants receivable | $5,000 |
| 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 | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,779 |
| Total assets | $616,097 |
| Accounts payable and accrued expenses | $7,124 |
| 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 | $7,124 |
| Net assets without donor restrictions | $518,973 |
| Net assets with donor restrictions | $90,000 |
| 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 | $616,097 |
Grants Awarded
Over the last fiscal year, Asxl Rare Research Endowment Foundation has awarded $110,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER PURPOSE: Project title: Identifying molecular targets for ASXL1 alteration-associated BOS | $55,000 |
Los Angeles, CA PURPOSE: Project title: Molecular and clinical biomarker development for Bohring-Opitz Syndrome | $55,000 |
Grants Recieved
Over the last fiscal year, we have identified 8 grants that Asxl Rare Research Endowment Foundation has recieved totaling $69,947.
| Awarding Organization | Amount |
|---|---|
Silicon Valley Community Foundation Mountain View, CA PURPOSE: Health | $50,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $17,000 |
American Express Foundation New York, NY PURPOSE: GENERAL SUPPORT | $670 |
American Express Foundation New York, NY PURPOSE: GENERAL SUPPORT | $670 |
American Express Foundation New York, NY PURPOSE: GENERAL SUPPORT | $669 |
American Express Foundation New York, NY PURPOSE: GENERAL SUPPORT | $465 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Whitehead Institute For Biomedical Research Cambridge, MA | $896,132,656 | $97,603,749 |
Dana Farber Mass General Brigham Cancer Care Inc Boston, MA | $42,647,489 | $95,186,368 |
Pan-Massachusetts Challenge Inc Needham, MA | $4,238,156 | $66,009,480 |
Third Sector New England Inc Boston, MA | $110,017,543 | $70,555,519 |
Lake Champlain Cancer Research Org Inc Essex Jct, VT | $0 | $292,033 |
Tufts Medical Center Parent Inc Braintree, MA | $132,535,337 | $31,702,650 |
Alzheimers Disease Research Foundation Wellesley Hills, MA | $23,967,152 | $26,572,727 |
Addgene Inc Watertown, MA | $22,116,271 | $23,985,910 |
South Shore Health Express Inc South Weymouth, MA | $32,089,469 | $12,224,356 |
Baim Institute For Clinical Research Inc Boston, MA | $19,935,879 | $17,724,993 |
The Cooperative Central Bank Woburn, MA | $0 | $2,132,200 |
Boston Va Research Institute Inc Boston, MA | $30,681,512 | $10,948,061 |