Fshd Society
- Assets
- $6.1m
- Revenue
- $3.5m
- Investments
- $0.0
- Employees
- 17
- Location
- Randolph, MA
- Founding
- 02/1992
- Data as of
- 12/2022
- EIN
- 52-1762747
Organization Overview
Fshd Society, operating under the name Fsh Society, is located in Randolph, MA. The organization was established in 1992. According to its NTEE Classification (H20) the organization is classified as: Birth Defects & Genetic Diseases Research, under the broad grouping of Medical Research and related organizations. As of 12/2022, Fsh Society employed 17 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Fsh Society 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 12/2022, Fsh Society generated $3.5m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 7.1% each year. All expenses for the organization totaled $4.7m during the year ending 12/2022. While expenses have increased by 12.8% 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.
Since 2015, Fsh Society has awarded 86 individual grants totaling $7,961,033. 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
INCREASE AWARENESS, UNDERSTANDING OF AND CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.
Describe the Organization's Program Activity:
Part 3 - Line 4a
RESEARCH THE SOCIETY SEEKS TO ACCELERATE RESEARCH TO EXPEDITE TREATMENTS AND A CURE FOR FSHD MUSCULAR DYSTROPHY. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION.
PATIENT ADVOCACY AND EDUCATIONTHE SOCIETY SEEKS TO ENLARGE, ENGAGE, & EMPOWER AN ACTIVE GLOBAL COMMUNITY. THE FSHD SOCIETY'S PATIENT ADVOCACY AND EDUCATION PROGRAMS DIRECTLY BENEFIT PATIENTS AND THEIR FAMILIES BY CONNECTING FSHD MUSCULAR DYSTROPHY PATIENTS AND FAMILIES TO HEALTHCARE PROVIDERS, RESEARCH INSTITUTIONS, AND SUPPORT GROUPS, PROVIDING HIGH-QUALITY EDUCATIONAL MATERIALS, ORGANIZING EDUCATIONAL MEETINGS AND CONFERENCES, AND CREATING OPPORTUNITIES AND SUPPORT FOR ADVOCACY AND RAISING PUBLIC AWARENESS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Mark Stone CEO & President | Officer | 40 | $223,921 |
Jamshid Arjomand Chief Science Officer | Officer | 40 | $197,520 |
Beth Johnston Chief Community Engagement | 40 | $122,500 | |
Lisa Schimmel CFO | Officer | 40 | $116,490 |
Leigh Reynolds Dir Of Research & Patient | 40 | $114,232 | |
Kenneth Alexander Kahtava Chief Business Officer | 40 | $108,907 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Biognosys Ag Contract Research Organization | 12/30/22 | $123,211 |
Iqvia Inc Data Management And Registry | 12/30/22 | $320,000 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $12,828 |
| Membership dues | $0 |
| Fundraising events | $739,414 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $2,178,534 |
| Noncash contributions included in lines 1a–1f | $32,687 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $2,930,776 |
| Total Program Service Revenue | $304,466 |
| Investment income | $98,205 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $35,699 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $3,508,920 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $413,900 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $648,850 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $630,609 |
| Compensation of current officers, directors, key employees. | $167,740 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $1,061,369 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $194,987 |
| Payroll taxes | $129,687 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $6,880 |
| Fees for services: Accounting | $16,000 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $209,545 |
| Advertising and promotion | $15,302 |
| Office expenses | $34,855 |
| Information technology | $193,675 |
| Royalties | $0 |
| Occupancy | $10,831 |
| Travel | $210,293 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $303,776 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $8,912 |
| All other expenses | $42,057 |
| Total functional expenses | $4,712,959 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $0 |
| Savings and temporary cash investments | $3,650,917 |
| Pledges and grants receivable | $162,636 |
| 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 | $58,985 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $1,806,777 |
| Investments—other securities | $0 |
| Investments—program-related | $150,000 |
| Intangible assets | $0 |
| Other assets | $250,000 |
| Total assets | $6,079,315 |
| Accounts payable and accrued expenses | $72,281 |
| Grants payable | $1,256,408 |
| 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 | $72,009 |
| Total liabilities | $1,400,698 |
| Net assets without donor restrictions | $2,724,386 |
| Net assets with donor restrictions | $1,954,231 |
| 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 | $6,079,315 |
Grants Awarded
Over the last fiscal year, Fshd Society has awarded $413,600 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
Baltimore, MD PURPOSE: THE FIBRO-ADIPOGENIC PROGENITORS, THE EXOSOMES, AND THE FSHD MYOPATHY | $143,000 |
Kansas City, KS PURPOSE: CLINICAL TRIALS RESEARCH NETWORK (CTRN) FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) | $120,000 |
UNIVERSITY OF MINNESOTA PURPOSE: INTERROGATION OF MDUX EXPRESSION IN MUSCLE IN MICE | $83,500 |
St Louis, MO PURPOSE: MOLECULAR MECHANISMS OF P38-DEPENDENT AND -INDEPENDENT DUX4 ACTIVATION DURING MYOGENESIS | $67,100 |
Grants Recieved
Over the last fiscal year, we have identified 16 grants that Fshd Society has recieved totaling $212,355.
| Awarding Organization | Amount |
|---|---|
Community Foundation Of Collier County Naples, FL PURPOSE: HEALTH | $74,165 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $48,670 |
S & L Marx Foundation Inc Wilmington, DE PURPOSE: GENERAL & UNRESTRICTED | $25,000 |
Grand Rapids Community Foundation Grand Rapids, MI PURPOSE: WALK AND ROLL FUNDRAISER CALIFORNIA, TEAM MADMACKAY. | $17,760 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HUMAN SERVICES | $17,400 |
Muscular Dystrophy Association Chicago, IL PURPOSE: ADVOCACY AND RESEARCH | $13,800 |
Endowment Analysis
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
The National Hemophilia Foundation New York, NY | $46,786,068 | $26,439,522 |
Hauptman-Woodward Medical Research Institute Inc Buffalo, NY | $26,101,769 | $9,359,091 |
Fshd Society Randolph, MA | $6,079,315 | $3,508,920 |
Hearing Health Foundation New York, NY | $12,344,240 | $5,730,095 |
Center For Human Genetics Inc Cambridge, MA | $9,835,244 | $2,410,975 |
Hereditary Disease Foundation New York, NY | $15,507,063 | $4,059,819 |
Cerebral Palsy Alliance Research Foundation New York, NY | $1,906,191 | $2,233,194 |
Everyone Reading Inc Brooklyn, NY | $262,422 | $247,442 |
The Kat6a Foundation Inc West Nyack, NY | $681,392 | $231,443 |
Sportsometry Inc New Haven, CT | $48,776 | $219,551 |
Foundation For A Cure For Mitochondrial Disease Inc Cheshire, CT | $3,406,125 | $277,765 |
Ct Hemophilia Society Windsor, CT | $320,640 | $0 |