National Tay Sachs & Allied Diseases Association Inc
- Assets
- $3.1m
- Revenue
- $1.3m
- Investments
- $0.0
- Employees
- 7
- Location
- Brighton, MA
- Founding
- 10/1959
- Data as of
- 06/2022
- EIN
- 13-1912877
Organization Overview
National Tay Sachs & Allied Diseases Association Inc is located in Brighton, MA. The organization was established in 1959. As of 06/2022, National Tay Sachs & Allied Diseases Association Inc employed 7 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Tay Sachs & Allied Diseases Association Inc 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, National Tay Sachs & Allied Diseases Association Inc generated $1.3m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 3.8% each year. All expenses for the organization totaled $770.8k during the year ending 06/2022. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, National Tay Sachs & Allied Diseases Association Inc has awarded 82 individual grants totaling $1,446,095. 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
2022
Describe the Organization's Mission:
Part 3 - Line 1
TO DETECT, PREVENT AND RESEARCH TAY-SACHS AND ALLIED DISEASES. THE ORGANIZATION ALSO PROVIDES SERVICES TO FAMILIES AND CHILDREN THAT ARE LIVING WITH THE DISEASES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH: MAKES GRANTS TO SCIENTISTS THROUGH A REQUEST FOR PROPOSAL PROCESS. THESE GRANTS ARE FOR RESEARCH PROJECTS THAT INVOLVE BASIC RESEARCH, TRANSLATIONAL STUDIES OR CLINICAL STUDIES IN THE AREAS OF NEURODEGENERATIVE DISORDERS AFFECTING THE CENTRAL NERVOUS SYSTEM.
FAMILY SERVICES: PROVIDES SUPPORT TO, AND ADVOCATE FOR, NEWLY DIAGNOSED FAMILIES AND INDIVIDUALS, FAMILIES AND CAREGIVERS ACTIVELY CARING FOR AN AFFECTED LOVED ONE WITH TAY-SACHS, CANAVAN, GM1, OR SANDHOFF DISEASE, AND BEREAVED FAMILIES AND INDIVIDUALS. CONNECT PATIENT COMMUNITY WITH RESEARCHERS AND INDUSTRY PARTNERS. FACILITATE PRIVATE SOCIAL MEDIA GROUP FOR AFFECTED INDIVIDUALS, FAMILIES, AND CAREGIVERS.
EDUCATION: DEVELOP AND DISSEMINATE RESOURCES ON TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES TO AFFECTED INDIVIDUALS, FAMILIES, AND CAREGIVERS. RESPOND TO INQUIRIES. HOST AN ANNUAL FAMILY CONFERENCE THAT INCLUDES FAMILY INTERACTION, SUPPORT SESSIONS, AND RESEARCH UPDATES BY CLINICIANS, RESEARCHERS, AND INDUSTRY LEADERS. CONSULT WITH MEMBERS OF THE SCIENTIFIC COMMUNITY.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Blyth Lord Director | OfficerTrustee | 2.5 | $0 |
Staci Kallish President | OfficerTrustee | 2.5 | $0 |
Lauren Celano Director | Trustee | 2.5 | $0 |
Lisajane Romer Secretary | OfficerTrustee | 2.5 | $0 |
Chris Chapman Director | Trustee | 2.5 | $0 |
Bonnie Davis Director | Trustee | 2.5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $896,290 |
| Investment income | $1,411 |
| 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 | $1,253,108 |
| Statement of Expenses | |
|---|---|
| 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. | $162,367 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $282,695 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $22,288 |
| Payroll taxes | $34,593 |
| Fees for services: Management | $26,923 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $8,600 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $6,527 |
| Advertising and promotion | $0 |
| Office expenses | $4,728 |
| Information technology | $21,268 |
| Royalties | $0 |
| Occupancy | $28,217 |
| Travel | $21,593 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $1,642 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $594 |
| Insurance | $5,501 |
| All other expenses | $0 |
| Total functional expenses | $770,790 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $3,046,835 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $58,400 |
| 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 | $8,558 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $900 |
| Total assets | $3,116,145 |
| Accounts payable and accrued expenses | $23,563 |
| 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 | $23,563 |
| Net assets without donor restrictions | $1,136,159 |
| Net assets with donor restrictions | $1,956,423 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Total liabilities and net assets/fund balances | $3,092,582 |
Grants Awarded
Over the last fiscal year, National Tay Sachs & Allied Diseases Association Inc has awarded $71,954 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL PURPOSE: LYSOSOMAL STORAGE DISEASE RESEARCH | $16,037 |
MASS GENERAL HOSPITAL - IHP PURPOSE: LYSOSOMAL STORAGE DISEASE RESEARCH | $55,917 |