Batten Disease Support And Research Association
- Assets
- $1.2m
- Revenue
- $746.1k
- Investments
- $0.0
- Employees
- 4
- Location
- Columbus, OH
- Founding
- 02/1994
- Data as of
- 12/2023
- EIN
- 91-1397792
Organization Overview
Batten Disease Support And Research Association is located in Columbus, OH. The organization was established in 1994. As of 12/2023, Batten Disease Support And Research Association employed 4 individuals. This organization is a parent organization of an affiliated group for tax-exemption purposes. Batten Disease Support And Research 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 12/2023, Batten Disease Support And Research Association generated $746.1k 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 (4.0%) each year. All expenses for the organization totaled $952.0k during the year ending 12/2023. 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
2023
Describe the Organization's Mission:
Part 3 - Line 1
OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PROGRAMS SUCH AS THE SIBLING PROGRAM, FAMILY HELP FUND, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE.
GRANTS WERE GIVEN FOR RESEARCH FOR A CURE FOR BATTEN DISEASE.
CONFERENCES AND CONVENTIONS HELD FOR RESEARCH, DISCUSSIONS AND SUPPORT FOR A CURE FOR BATTEN DISEASE.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Amy Fenton Parker President & | Officer | 40 | $98,500 |
Darlene Royalty Board Chair | OfficerTrustee | 1 | $0 |
Barbara Wuebbels Board Vice C | OfficerTrustee | 1 | $0 |
Barbara Mcdonough Secretary | OfficerTrustee | 1 | $0 |
Fred Surrey Treasurer | OfficerTrustee | 1 | $0 |
John Ireland Sibling Rep. | Trustee | 1 | $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 | $724,656 |
| Noncash contributions included in lines 1a–1f | $6,192 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $724,656 |
| Total Program Service Revenue | $0 |
| Investment income | $21,491 |
| 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 | $746,147 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $52,000 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $30,000 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $98,500 |
| Compensation of current officers, directors, key employees. | $35,946 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $184,332 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $9,732 |
| Payroll taxes | $20,130 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $22,350 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $2,778 |
| Fees for services: Other | $32,985 |
| Advertising and promotion | $0 |
| Office expenses | $65,702 |
| Information technology | $70,850 |
| Royalties | $0 |
| Occupancy | $25,336 |
| Travel | $108,751 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $117,008 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $11,623 |
| Insurance | $7,071 |
| All other expenses | $1,507 |
| Total functional expenses | $952,036 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $445,787 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $43,630 |
| 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 | $4,282 |
| Net Land, buildings, and equipment | $34,362 |
| Investments—publicly traded securities | $668,380 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $6,810 |
| Total assets | $1,203,251 |
| Accounts payable and accrued expenses | $26,983 |
| Grants payable | $56,000 |
| 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 | $82,983 |
| Net assets without donor restrictions | $997,221 |
| Net assets with donor restrictions | $123,047 |
| 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 | $1,203,251 |
Grants Awarded
Over the last fiscal year, Batten Disease Support And Research Association has awarded $50,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
WASHINGTON UNIVERSITY PURPOSE: RESEARCH | $10,000 |
UNIVERSITY OF NORTH CAROLINAAT CHAPEL HILL PURPOSE: RESEARCH | $40,000 |