Coalition To Cure Calpain 3
- Assets
- $252.0k
- Revenue
- $711.9k
- Investments
- $0.0
- Employees
- 1
- Location
- Westport, CT
- Founding
- 05/2011
- Data as of
- 12/2023
- EIN
- 90-0616879
Organization Overview
Coalition To Cure Calpain 3 is located in Westport, CT. The organization was established in 2011. According to its NTEE Classification (G12) the organization is classified as: Fund Raising & Fund Distribution, 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. Coalition To Cure Calpain 3 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, Coalition To Cure Calpain 3 generated $711.9k in total revenue. This organization has experienced exceptional growth, as over the past 8 years, it has increased revenue by an average of 13.8% each year . All expenses for the organization totaled $770.5k during the year ending 12/2023. While expenses have increased by 22.6% per year over the past 8 years. They've been increasing with an increasing level of total revenue. 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
COALITION TO CURE CALPAIN 3 MISSION IS TO FUND RESEARCH TO CURE OR TREAT LIMB-GIRDLE MUSCULAR DYSTROPHY TYPE 2A (LGMD2A/R1),A FORM OF CALPAINOPATHY, AND TO RAISE GLOBAL AWARENESS OF THE DISEASE AMONG THE SCIENTIFIC COMMUNITY, PATIENTS, AND THE PUBLIC.
Describe the Organization's Program Activity:
Part 3 - Line 4a
ELISABETH BARTON & LAN WEI-LAPIERRE (UNIVERSITY OF FLORIDA): "STRATEGIES TO IMPROVE CALCIUM HANDLING IN LGMDR1/2A" SIRI BOLDING (CASIMIR): "A CONCEPT ELICITATION/FEASIBILITY STUDY FOR THE LIMB GIRDLE VIDEO ASSESSMENT" JORDI DIAZ-MANERA (NEWCASTLE UNIVERSITY): "IMPROVING CLINICAL TRIAL READINESS BY INVESTIGATING THE SUITABILITY OF CLINICAL OUTCOME ASSESSMENTS AND DOCUMENTING THE NATURAL PROGRESSION OF LGMD2A/R1 - A RETROSPECTIVE ANALYSIS"KEVIN FORREST (KATE THERAPEUTICS): "GENE THERAPY FOR LGMD2A"
PARTICIPATED IN OUTREACH INITIATIVES TO SCIENTIFIC COMMUNITY AND PATIENTS TO EDUCATE AND BUILD AWARENESS OF LGMD2A
DEVELOPING NEW PATIENT REGISTRY WITH NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Jordan Boslego President | OfficerTrustee | 6 | $0 |
Michele Wrubel Senior V. President | OfficerTrustee | 25 | $0 |
Lee Wrubel Treasurer | OfficerTrustee | 5 | $0 |
Demosthenes Madureira DE Pinho Neto Director | OfficerTrustee | 1 | $0 |
Alberto Nobrega Director | OfficerTrustee | 3 | $0 |
Carol Abraham Director | OfficerTrustee | 10 | $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 | $711,922 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $711,922 |
| 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 | $711,922 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $538,695 |
| 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 | $122,606 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $5,500 |
| Payroll taxes | $9,761 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $12,400 |
| Fees for services: Accounting | $15,542 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $783 |
| Advertising and promotion | $0 |
| Office expenses | $5,937 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $9,459 |
| 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 | $180 |
| Insurance | $0 |
| All other expenses | $8,430 |
| Total functional expenses | $770,459 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $209,344 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| 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 | $356 |
| Net Land, buildings, and equipment | $1,081 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $41,267 |
| Total assets | $252,048 |
| Accounts payable and accrued expenses | $0 |
| Grants payable | $417,111 |
| 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 | $3,236 |
| Total liabilities | $420,347 |
| Net assets without donor restrictions | -$168,299 |
| Net assets with donor restrictions | $0 |
| 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 | $252,048 |
Grants Awarded
Over the last fiscal year, Coalition To Cure Calpain 3 has awarded $150,641 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF MINNESOTA-DR PERLINGEIRO PURPOSE: GENE EDITING OF CALPAIN C3 IN LGMD IPS CELLS | $61,441 |
STANFORD UNIVERSITY-DR CALOS PURPOSE: CALPAINOPATHY: DNA-MEDIATED GENE THERAPY | $27,787 |
THE JACKSON LABORATORY-DR LUTZ PURPOSE: USING CRISPR/CAS 9 TO CREATE AND CHARACTERIZE KNOCK OUT AND NULL ALLELES ON MULTIPLE GENETIC BACKGROUNDS | $20,000 |
UC REGENTS-DR SPENCER PURPOSE: IDENTIFICATION OF CALPAIN 3 SUBSTRATES THROUGH USE OF 2D DIGE AND MASS SPECTROSCOPY. TESTING MYOSTATIN INHIBITORS IN THE CALPAIN 3 KNOCK OUT MOUSE | $41,413 |