Beyond Batten Disease Foundation
- Assets
- $3.6m
- Revenue
- $1.2m
- Investments
- $2.5m
- Employees
- 0
- Location
- Austin, TX
- Founding
- 03/2009
- Data as of
- 06/2022
- EIN
- 26-3223661
Organization Overview
Beyond Batten Disease Foundation is located in Austin, TX. The organization was established in 2009. According to its NTEE Classification (B90) the organization is classified as: Educational Services, under the broad grouping of Education and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Beyond Batten Disease 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 06/2022, Beyond Batten Disease Foundation generated $1.2m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 6 years, the organization has seen revenues fall by an average of (9.0%) each year. All expenses for the organization totaled $1.2m during the year ending 06/2022. As we would expect to see with falling revenues, expenses have declined by (2.8%) per year over the past 6 years. You can explore the organizations financials more deeply in the financial statements section below.
Form
990T
Mission & Program ActivityExcerpts From the 990T Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
TO ERADICATE JUVENILE BATTEN DISEASE BY RAISING AWARENESS AND FUNDS FOR RESEARCH TO FIND A TREATMENT OR CURE.
Describe the Organization's Program Activity:
TO ACCELERATE THE DISCOVERY AND DEVELOPMENT OF MEDICINES TO PREVENT, TREAT AND CURE JUVENILE BATTEN DISEASE. THIS IS DONE THROUGH GRANTING FUNDS AND CONTRACTING SERVICES WITH ACADEMIC INSTITUTIONS, BIOTECHNOLOGY COMPANIES, AND OTHER ORGANIZATIONS WITH THE CAPACITY TO ASSIST IN ACHIEVING OUR GOALS. THE FOUNDATION ALSO SPEARHEADS THE DEVELOPMENT OF THINK-TANK CONFERENCES AND UNIQUE PARTNERSHIPS TO DRIVE JUVENILE BATTEN DISEASE RESEARCH.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
T Craig Benson Board Chair | OfficerTrustee | 20 | $0 |
Mary Beth Kiser President/ceo And Secretary | Officer | 40 | $0 |
Jeff Hunt Director | Trustee | 4 | $0 |
Sabrina Brown Director | Trustee | 4 | $0 |
Wayne Herndon Director | Trustee | 4 | $0 |
Will Murphy Director | Trustee | 4 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Strategic Association Management Management | 6/29/22 | $210,000 |
Engage Health Research | 6/29/22 | $144,300 |
Mass General Hospital Research | 6/29/22 | $164,687 |
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 | $825,881 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $825,881 |
| Total Program Service Revenue | $0 |
| Investment income | $5 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $21,000 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $4,774 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,219,815 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $25,000 |
| 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 | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| Fees for services: Management | $210,895 |
| Fees for services: Legal | $83,393 |
| Fees for services: Accounting | $13,050 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $704,895 |
| Advertising and promotion | $0 |
| Office expenses | $22,416 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $31,531 |
| Travel | $1,246 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $26,030 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $791 |
| All other expenses | $101,443 |
| Total functional expenses | $1,220,690 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $687,287 |
| Savings and temporary cash investments | $185,641 |
| Pledges and grants receivable | $153,245 |
| Accounts receivable, net | $1,200 |
| 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 | $36,210 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $2,518,000 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $3,581,583 |
| Accounts payable and accrued expenses | $158,881 |
| Grants payable | $0 |
| Deferred revenue | $61,135 |
| 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 | $220,016 |
| Net assets without donor restrictions | $3,208,322 |
| Net assets with donor restrictions | $153,245 |
| 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 | $3,581,583 |
Grants Awarded
Over the last fiscal year, Beyond Batten Disease Foundation has awarded $675,955 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
TEXAS CHILDREN'S HOSPITAL PURPOSE: See Sched O | $617,100 |
MASS GENERAL HOSPITAL PURPOSE: See Sched O | $58,855 |