Cacna1a Foundation Inc
- Assets
- $863.3k
- Revenue
- $385.9k
- Investments
- $0.0
- Employees
- 0
- Location
- Norwalk, CT
- Founding
- Data as of
- 12/2023
- EIN
- 84-4985747
Organization Overview
Cacna1a Foundation Inc is located in Norwalk, CT. According to its NTEE Classification (G20) the organization is classified as: Birth Defects & Genetic Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Cacna1a Foundation 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 12/2023, Cacna1a Foundation Inc generated $385.9k in total revenue. This organization has experienced exceptional growth, as over the past 4 years, it has increased revenue by an average of 18.9% each year . All expenses for the organization totaled $453.7k 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
TO FIND SPECIFIC TREATMENT OPTIONS AND A CURE FOR CACNA1A PATIENTS. (SEE SCHEDULE O FOR FULL MISSION)
Describe the Organization's Program Activity:
Part 3 - Line 4a
WE WERE SELECTED TO PARTNER WITH THE ORPHAN DISEASE CENTER AND THE UNIVERSITY OF PENNSYLVANIA TO DEVELOP THE FIRST-EVER DISEASE CONCEPT MODEL STUDY FOR CACNA1A-RELATED DISORDERS. WE ALSO AWARDED THREE NEW RESEARCH GRANTS THIS YEAR EXEMPLIFYING OUR COMMITMENT TO ADVANCING SCIENTIFIC BREAKTHROUGHS FOR THE CACNA1A COMMUNITY. WE FUNDED: (I) SAMUEL YOUNG JR., PHD FOR DEVELOPMENT OF NOVEL GENE THERAPY STRATEGIES TO TREAT CACNA1A-RELATED DISORDERS; (II) HENRY COLECRAFT, PHD FOR FIXING CAV2.1 FUNCTIONAL EXPRESSION TO TREAT CACNA1A DISORDERS AND (III) BART VAN DE WARRENBURG, MD, PHD FOR DEVELOPMENT OF AN IN VITRO COMPOUND SCREENING ASSAY UTILIZING AN ELECTROPHYSIOLOGICAL FINGERPRINT IN INDUCED PLURIPOTENT STEM CELL-DERIVED NEURONS CARRYING A CACNA1A GAIN-OF-FUNCTION VARIANT. WE ALSO FORMED NEW WORKING GROUPS IN OUR RESEARCH NETWORK TO DRIVE PROGRESS IN NATURAL HISTORY STUDY/BIOMARKER DEVELOPMENT, PRECLINICAL-TO-CLINICAL RESEARCH; AND VARIANT CLASSIFICATION.
THE CACNA1A FOUNDATION HOSTED ITS SECOND RESEARCH ROUNDTABLE: COLLABORATING TO ACCELERATE THE PATH TO CACNA1A CLINICAL TRIALS ON OCTOBER 9-10TH AT THE NEW YORK ACADEMY OF MEDICINE IN NEW YORK CITY. THERE WERE OVER 55 ATTENDEES, INCLUDING 48 RESEARCHERS, CLINICIANS, TRAINEES, AND REPRESENTATIVES FROM INDUSTRY AND THE NIH. THE OVERARCHING PURPOSE WAS TO EXCHANGE IDEAS AND BUILD COLLABORATIONS AMONG THE CACNA1A RESEARCH NETWORK TO DEVELOP CACNA1A-SPECIFIC TREATMENTS AND PUSH THEM INTO CLINICAL TRIALS FOR FDA APPROVAL. THE MEETING WAS DIVIDED INTO FOUR SESSIONS, EACH FOCUSED ON ONE OF THE FOLLOWING GOALS: (I) DEVELOP STRATEGIES FOR IDENTIFYING BIOMARKERS AND ENDPOINTS FOR CACNA1A-RELATED DISORDERS;CONTINUED ON SCH O.
OUR TEAM ATTENDED OVER A DOZEN RARE DISEASE OR HEALTHCARE PROFESSIONAL CONFERENCES, FACILITATING MEANINGFUL COLLABORATIONS AND FOSTERING CONNECTIONS WITH EXPERTS, RESEARCHERS, AND OTHER PATIENT ADVOCATES. THESE MEETINGS ARE CRUCIAL PLATFORMS FOR RAISING AWARENESS ABOUT CACNA1A-RELATED DISORDERS, ALLOWING US TO SHARE INSIGHTS, BREAKTHROUGHS, AND CHALLENGES WITH A BROADER AUDIENCE. SOME OF THE EVENTS WE ATTENDED INCLUDED MEETINGS HOSTED BY THE AMERICANEPILEPSY SOCIETY, AMERICAN ACADEMY OF PEDIATRIC OPHTHALMOLOGISTS, NATIONAL ATAXIA FOUNDATION, RARE DRUG DEVELOPMENT SYMPOSIUM, ST. JUDE PEDIATRIC TRANSLATIONAL NEUROSCIENCE INITIATIVE, NATIONAL ORGANIZATION OF RARE DISEASES, AND THE AMERICAN ACADEMY OF PEDIATRICS.
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PDF Copies of 990 Filings
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Allison Buchner Director | Trustee | 5 | $0 |
Hala Mirza Director | Trustee | 2 | $0 |
Deborah Ondrasik MD Director | Trustee | 5 | $0 |
Sarah Greathouse Director | Trustee | 5 | $0 |
Lisa Manaster President | OfficerTrustee | 40 | $0 |
Sunitha Malepati Vice President & Treasurer | OfficerTrustee | 40 | $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 | $385,860 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $385,860 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| 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 | $385,860 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $124,996 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $50,000 |
| 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 | $0 |
| Fees for services: Legal | $315 |
| Fees for services: Accounting | $7,200 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $144,370 |
| Advertising and promotion | $7,607 |
| Office expenses | $9,183 |
| Information technology | $11,012 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $5,765 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $89,349 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $2,192 |
| All other expenses | $1,714 |
| Total functional expenses | $453,703 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $842,640 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $20,688 |
| 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 | $0 |
| Total assets | $863,328 |
| Accounts payable and accrued expenses | $25,695 |
| Grants payable | $152,500 |
| 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 | $178,195 |
| Net assets without donor restrictions | $512,627 |
| Net assets with donor restrictions | $172,506 |
| 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 | $863,328 |
Grants Awarded
Over the last fiscal year, Cacna1a Foundation Inc has awarded $125,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
COLUMBIA UNIVERSITY BOARD OF TRUSTE PURPOSE: Research | $75,000 |
UNIVERSITY OF IOWA PURPOSE: Research | $50,000 |