Dup 15q Alliance
- Assets
- $595.0k
- Revenue
- $739.8k
- Investments
- $0.0
- Employees
- 6
- Location
- Park Ridge, IL
- Founding
- 08/2004
- Data as of
- 12/2021
- EIN
- 20-0751232
Organization Overview
Dup 15q Alliance is located in Park Ridge, IL. The organization was established in 2004. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Dup 15q Alliance employed 6 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Dup 15q Alliance 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 12/2021, Dup 15q Alliance generated $739.8k in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 13.0% each year . All expenses for the organization totaled $832.8k during the year ending 12/2021. While expenses have increased by 15.2% per year over the past 7 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 2017, Dup 15q Alliance has awarded 14 individual grants totaling $573,758. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
WE EMPOWER INDIVIDUALS LIVING WITH DUP15Q SYNDROME AND OTHER RELATED RARE DISEASES TO REACH THEIR FULL POTENTIAL BY ADVANCING BREAKTHROUGH RESEARCH AND LIFE-CHANGING THERAPEUTIC TREATMENTS, SUPPORTING FAMILIES AFFECTED BY DUP15Q, AND PROMOTING ADVOCACY. WE ENVISION A WORLD WHERE FAMILIES, CLINICIANS, AND ADVOCATES ENABLE INDIVIDUALS WITH DUP15Q TO LIVE FULL AND PRODUCTIVE LIVES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
CONFERENCE, EDUCATION & OUTREACH: WE OFFER PROGRAMS THAT UPLIFT, SUPPORT, AND ENGAGE OUR COMMUNITY BY PROVIDING A VARIETY OF RESOURCES AND SUPPORT OPTIONS, INCLUDING: INFORMATION ABOUT CHROMOSOME 15Q11.2-13.1 DUPLICATION SYNDROME INCLUDING SYMPTOMS, DIAGNOSIS, AND TREATMENTS; A NEWLY DIAGNOSED HANDBOOK; EDUCATIONAL RESOURCES INCLUDING PRINTABLES AND WEBINARS; COMMUNITY CONNECTION SUPPORT CALLS FOR FAMILIES AND SIBLINGS; REGIONAL GATHERINGS FOR FAMILIES AND CAREGIVERS; CRISIS AND BEREAVEMENT SUPPORT; AND RESOURCES TO NAVIGATE THE VARIOUS CHALLENGES OF THE DUP15Q JOURNEY INCLUDING THE TRANSITION INTO ADULTHOOD; A BIENNIAL INTERNATIONAL FAMILY CONFERENCE AND SCIENCE SYMPOSIUM, WHICH PROVIDES FAMILIES WITH AN OPPORTUNITY TO MEET AND LEARN. OUR CONFERENCES CONNECT FAMILIES AND PROFESSIONALS, FROM THE US AND INTERNATIONALLY, TO PROVIDE PERTINENT INFORMATION REGARDING DUP15Q SYNDROME ADVANCES AND TREATMENTS, AND INCLUDE SCIENTIFIC, GENETIC AND CLINICAL DISCUSSIONS, RESPITE CARE, SIBLING SESSIONS, GROUP ACTIVITIES, AND BREAK- OUT SESSIONS FOR PARENTS.
RESEARCH GRANTS: DUP15Q ALLIANCE SEEKS TO UNITE FAMILIES, RESEARCHERS, AND PROFESSIONALS; AND PROMOTE RESEARCH, AWARENESS, AND UNDERSTANDING OF CHROMOSOME 15Q11.2- 13.1 DUPLICATION SYNDROME AND RELATED DISORDERS. WE FORMALLY ENDORSE AND FUND RESEARCH, DISSEMINATE RESEARCH INFORMATION, AND PROMOTE OPPORTUNITIES FOR DUP15Q ALLIANCE FAMILIES TO PARTICIPATE IN RESEARCH STUDIES AND REGISTRIES. OUR COMMUNITY NEEDS TO FIND BETTER TREATMENTS FOR ALL OF THE SYMPTOMS OF DUP15Q SYNDROME, WE NEED TO KNOW HOW THOSE WITH DUP15Q SYNDROME DEVELOP OVER TIME, AND WE NEED TO KNOW WHY SOME CHILDREN AFFECTED BY DUP15Q SYNDROME HAVE SEIZURES AND SOME DON'T. DIRECT PATIENT AND FAMILY RESEARCH IS CRITICAL TO MEET THESE NEEDS, IDENTIFY OTHER NEEDS, AND TO FIND LIFE- CHANGING THERAPEUTIC TREATMENTS.
CLINIC SUPPORT: PROVIDING HIGH-QUALITY MEDICAL CARE FOR INDIVIDUALS WITH DUP15Q SYNDROME, WE CONNECT THOSE WHO PRACTICE EVIDENCE-BASED MEDICINE WITH A HIGH LEVEL OF EXCELLENCE AND ENSURE THAT AS MANY FAMILIES HAVE ACCESS TO IT AS POSSIBLE. DUP15Q ALLIANCE CURRENTLY SUPPORTS 18 SPECIALIZED CLINICS AROUND THE WORLD, WITH MORE IN THE WORKS. AT THE CLINICS, INDIVIDUALS HAVE ACCESS TO A VARIETY OF PROFESSIONALS ALL SPECIALIZING IN AREAS AFFECTED BY THE 15TH CHROMOSOME, SUCH AS CLINICAL GENETICISTS, NEUROLOGISTS, PSYCHIATRISTS, PSYCHOLOGISTS, SPEECH LANGUAGE PATHOLOGISTS, PHYSICAL/OCCUPATIONAL THERAPISTS, GENETIC COUNSELORS, SOCIAL WORKERS, AND NUTRITIONISTS. DUP15Q CLINICS ALSO LINK PROVIDERS TOGETHER TO SHARE INFORMATION ABOUT THEIR MOST CHALLENGING CASES, CONNECT PATIENTS TO CLINICAL TRIALS, AND LINK ALL THE DATA TOGETHER-TO PAVE THE WAY FOR ADVANCEMENTS IN CARE.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Vanessa Vogel-Farley Board Member | Trustee | 5 | $37,500 |
Carrie Howell Executive Di | Officer | 40 | $35,000 |
David Gifford Chair | OfficerTrustee | 10 | $0 |
Lisa Feehery Vice Chair | OfficerTrustee | 5 | $0 |
Anne Karch Secretary | OfficerTrustee | 5 | $0 |
Tony Marmo Treasurer | OfficerTrustee | 5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $112,840 |
| All other contributions, gifts, grants, and similar amounts not included above | $456,861 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $569,701 |
| Total Program Service Revenue | $142,837 |
| Investment income | $12,714 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $14,542 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $739,794 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $268,883 |
| 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. | $72,500 |
| Compensation of current officers, directors, key employees. | $27,550 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $207,059 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $23,244 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $9,000 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $9,784 |
| Advertising and promotion | $0 |
| Office expenses | $14,765 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $180,187 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $2,692 |
| Insurance | $0 |
| All other expenses | $0 |
| Total functional expenses | $832,762 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $223,846 |
| Savings and temporary cash investments | $300,170 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $37,290 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $2,859 |
| 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 | $30,876 |
| Total assets | $595,041 |
| Accounts payable and accrued expenses | $9,980 |
| Grants payable | $0 |
| Deferred revenue | $18,730 |
| 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 | $28,710 |
| Net assets without donor restrictions | $566,331 |
| 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 | $595,041 |
Grants Awarded
Over the last fiscal year, Dup 15q Alliance has awarded $268,883 in support to 3 organizations.
| Grant Recipient | Amount |
|---|---|
VARIOUS | | | $166,883 |
Aurora, IL PURPOSE: NEWBORN SCREENING | $77,000 |
Chapel Hill, NC PURPOSE: RESEARCH | $25,000 |
Grants Recieved
Over the last fiscal year, we have identified 9 grants that Dup 15q Alliance has recieved totaling $239,064.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $128,582 |
Seligman Foundation New York, NY PURPOSE: MEETING HUMAN NEEDS | $37,460 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $24,623 |
Robins Family Foundation Gem Lake, MN PURPOSE: CIVIC/ COMMUNITY | $13,875 |
Biotechnology Innovation Organization Washington, DC PURPOSE: SUPPORT | $10,000 |
Simons Foundation Inc New York, NY PURPOSE: 2021 MOVING MOUNTAINS DUP15Q ALLIANCE CONFERENCE | $10,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Childrens Autism Centerincorporated Fort Wayne, IN | $8,774,831 | $9,960,141 |
Central East Alcoholism & Drug Council Charleston, IL | $3,025,211 | $6,812,078 |
Meredith-Dunn Learning Center Inc Louisville, KY | $4,614,484 | $3,584,903 |
Burns And Mcdonnell Foundation Kansas City, MO | $20,833,020 | $825,239 |
Digestive Health Foundation Chicago, IL | $9,007,298 | $1,193,686 |
The Latino Alzheimers And Memory Disorders Alliance Cicero, IL | $52,784 | $1,079,931 |
Dup 15q Alliance Park Ridge, IL | $595,041 | $739,794 |
American Contact Dermatitis Society Milwaukee, WI | $2,011,445 | $820,776 |
Ehe Foundation Hobart, WI | $1,985,458 | $1,636,401 |
International Eczema Council Chicago, IL | $2,853,883 | $803,591 |
Lupus Society Of Illinois Chicago, IL | $397,218 | $577,886 |
Kentucky Diabetes Camp For Children Inc Louisville, KY | $645,456 | $463,260 |