Glut1 Deficiency Foundation Inc
- Assets
- $447.9k
- Revenue
- $777.0k
- Investments
- $0.0
- Employees
- 2
- Location
- Owingsville, KY
- Founding
- 10/2011
- Data as of
- 12/2022
- EIN
- 45-2190535
Organization Overview
Glut1 Deficiency Foundation Inc is located in Owingsville, KY. 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. As of 12/2022, Glut1 Deficiency Foundation Inc employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Glut1 Deficiency 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 12/2022, Glut1 Deficiency Foundation Inc generated $777.0k in total revenue. This organization has experienced exceptional growth, as over the past 8 years, it has increased revenue by an average of 18.4% each year . All expenses for the organization totaled $611.8k during the year ending 12/2022. While expenses have increased by 18.1% 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 2020, Glut1 Deficiency Foundation Inc has awarded 17 individual grants totaling $708,350. 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
THE GLUT1 DEFICIENCY FOUNDATION IS A NONPROFIT PATIENT ADVOCACY ORGANIZATION DEDICATED TO IMPROVING LIVES IN THE GLUT1 DEFICIENCY COMMUNITY THROUGH ITS MISSION OF INCREASED AWARENESS, IMPROVED EDUCATION, ADVOCACY FOR PATIENTS AND FAMILIES, AND SUPPORT AND FUNDING FOR RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE GLUT1 DEFICIENCY FOUNDATION SUPPORTS RESEARCH TO LEAD TO BETTER UNDERSTANDING, BETTER TREATMENT, AND A CURE FOR GLUT1 DEFICIENCY. RESEARCH PROJECT GRANTS ARE DISTRIBUTED TO SCIENTISTS WITH PROJECTS THAT ADDRESS NEEDS AND PRIORITIES IDENTIFIED THROUGH COLLABORATIVE STAKEHOLDER PROCESSES IN DEVELOPMENT OF OUR STRATEGIC RESEARCH PLAN (RESEARCH COMPASS). IN 2022, THE GLUT1 DEFICIENCY FOUNDATION FUNDED TWO PROJECTS AT TWO INSTITUTIONS FOR A TOTAL OF $60,000. ADDITIONAL RESEARCH FUNDS WERE INVESTED IN EFFORTS TO HOST OUR IN-PERSON SCIENTIFIC CONVENING; GROW OUR COLLABORATIVE RESEARCH NETWORK; HOST RESEARCH ROUNDTABLES; COLLECT AND PROCESS PATIENT BIOSAMPLES FOR AN ONGOING RESEARCH PROJECT; DEVELOP AND FUND A PATIENT BIOREPOSITORY; DEVELOP A NATURAL HISTORY STUDY; AND DEVELOP OPEN SOURCE RESEARCH TOOLS.
THE GLUT1 DEFICIENCY FOUNDATION IS ENGAGED IN COLLABORATIONS WITH NATIONAL AND INTERNATIONAL RARE DISEASE PATIENT ADVOCACY ORGANIZATIONS TO PROVIDE A REPRESENTATIVE VOICE FOR PATIENTS AND FAMILIES IN PUBLIC DISCUSSION AND POLICY ISSUES. THE G1DF ADVOCATES FOR FAMILIES AND PATIENTS ACROSS SCHOOL, HEALTHCARE, AND DISABILITY PROGRAMS TO MAKE SURE THE CHALLENGES OF THE DISEASE ARE UNDERSTOOD AND THAT PATIENT RIGHTS ARE BEING PROTECTED. ADVOCACY EFFORTS FOR 2022 INCLUDED MEMBERSHIP IN THE NATIONAL ORGANIZATION FOR RARE DISORDERS, GLOBAL GENES FOUNDATION ALLIANCE, THE RARE EPILEPSY NETWORK, AND COMBINEDBRAIN. WE PARTICIPATED IN NUMEROUS ONLINE TRAININGS AND CONFERENCES.
THE GLUT1 DEFICIENCY FOUNDATION HAS SEVERAL OUTREACH PROGRAMS TO HELP RAISE AWARENESS AND IMPROVE EDUCATION AMONG STAKEHOLDERS IN THE COMMUNITY. WE HOSTED OUR BIENNUAL FAMILY CONFERENCE IN 2022. WE HOSTED EDUCATIONAL EXHIBITS AT FIVE PROFESSIONAL MEDICAL MEETINGS. WE PROVIDE WELCOME PACKETS TO NEWLY DIAGNOSED FAMILIES WHO JOIN OUR FAMILY NETWORK, HOST MONTHLY VIRTUAL CONVENINGS, AND MAINTAIN AN INCREASING NUMBER OF RESOURCES ON OUR WEBSITE. WE CREATED SEVERAL NEW EDUCATIONAL VIDEOS IN 2022.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Glenna Steele Executive Director | Officer | 40 | $45,000 |
Sandra Ojeda Torres Science Director | Trustee | 30 | $35,866 |
Jason Meyers President | Trustee | 5 | $0 |
Rob Rapaport Secretary | Trustee | 5 | $0 |
April York Vice President | Trustee | 2 | $0 |
Erin Meisner Advocacy Director | Trustee | 3 | $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 | $739,064 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $739,064 |
| Total Program Service Revenue | $36,378 |
| 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 | $776,976 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $60,000 |
| 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. | $86,061 |
| Compensation of current officers, directors, key employees. | $9,499 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $6,365 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $39 |
| Fees for services: Accounting | $10,146 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $0 |
| Advertising and promotion | $0 |
| Office expenses | $840 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $194 |
| 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 | $0 |
| Insurance | $1,657 |
| All other expenses | $25,567 |
| Total functional expenses | $611,811 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $421,810 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $1,139 |
| 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 | $25,000 |
| 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 | $447,949 |
| Accounts payable and accrued expenses | $7,545 |
| 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 | $7,545 |
| Net assets without donor restrictions | $440,404 |
| 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 | $447,949 |
Grants Awarded
Over the last fiscal year, Glut1 Deficiency Foundation Inc has awarded $60,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF TEXAS SOUTHWESTERN PURPOSE: RESEARCH GRANT | $30,000 |
Philadelphia, PA PURPOSE: RESEARCH GRANT | $30,000 |
Grants Recieved
Over the last fiscal year, we have identified 11 grants that Glut1 Deficiency Foundation Inc has recieved totaling $34,449.
| Awarding Organization | Amount |
|---|---|
Johnson Charitable Gift Fund Cincinnati, OH PURPOSE: GENERAL FUND | $20,275 |
Hunter Fund Mtn Brook, AL PURPOSE: OPERATING FUNDS | $5,000 |
Marc And Jeanne Malnati Family Foundation Inc Schaumburg, IL PURPOSE: GENERAL OPERATING | $5,000 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $2,199 |
Bank Of America Charitable Foundation Inc Charlotte, NC PURPOSE: OPERATIONAL SUPPORT | $1,000 |
E Murdoch Family Foundation Berwyn, PA PURPOSE: GENERAL DONATION | $525 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
The Against Malaria Foundation Kansas City, MO | $318 | $95,777,874 |
Townebank Foundation Suffolk, VA | $12,218,911 | $5,948,178 |
Hope For Haitis Children Ministries Inc Cincinnati, OH | $7,123,949 | $4,468,101 |
Usher Iii Initiative Inc Chicago, IL | $1,337,377 | $2,469,529 |
Resort Charity Events Inc Bloomington, IN | $167,488 | $1,958,916 |
Investigative Research Center Inc Arlington, VA | $96,743 | $0 |
Disability Resource In Homeservices Inc Festus, MO | $80,012 | $820,552 |
Ollie Hinkle Heart Foundation Webster Groves, MO | $1,363,542 | $833,389 |
Friends Of Dba Strongsville, OH | $348,955 | $938,128 |
The Gala Of Hope Foundation Inc Beavercreek, OH | $946,576 | $856,062 |
Thompson Foundation For Autism Columbia, MO | $1,001,844 | $651,075 |
Prayers From Maria Foundation Rocky River, OH | $1,459,519 | $1,224,922 |