Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | ||||||
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf .... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | ||||||
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | ||||||
| 6 | Public support. Subtract line 5 from line 4. | ||||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | ||||||
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | ||||||
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | ||||||
Calendar year (or fiscal
year beginning in) ![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | 515,718 | 483,391 | 569,701 | 454,102 | 545,602 | 2,568,514 |
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | 158,662 | 104,145 | 377,668 | 640,475 | ||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | 10,710 | 24,057 | 34,767 | |||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | 526,428 | 507,448 | 728,363 | 558,247 | 923,270 | 3,243,756 |
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | 3,243,756 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2019 | (b) 2020 | (c) 2021 | (d) 2022 | (e) 2023 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | 526,428 | 507,448 | 728,363 | 558,247 | 923,270 | 3,243,756 |
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | 13,430 | 11,665 | 12,714 | 9,253 | 8,695 | 55,757 |
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | 13,430 | 11,665 | 12,714 | 9,253 | 8,695 | 55,757 |
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | 539,858 | 519,113 | 741,077 | 567,500 | 931,965 | 3,299,513 |
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2023 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2023 |
(iii) Distributable Amount for 2023 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2023 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2023 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2023: | ||||
| a From 2018....... | ||||
| b From 2019....... | ||||
| c From 2020....... | ||||
| d From 2021....... | ||||
| e From 2022....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2023 distributable amount | ||||
|
i
Carryover from 2018 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2023 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2023 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2023, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2023. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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7 Excess distributions carryover to 2024. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2019..... | ||||
| b Excess from 2020..... | ||||
| c Excess from 2021..... | ||||
| d Excess from 2022..... | ||||
| e Excess from 2023..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
|---|---|
| FORM 990 - ORGANIZATION'S MISSION | DUP15Q ALLIANCE EMPOWERS 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. WE SERVE AS THE LEADER IN RESEARCH, ADVOCACY, AND CLINICAL STANDARDS OF CARE FOR DUP15Q SYNDROME, AND ARE OFTEN THE FIRST POINT OF CONTACT FOR FAMILIES SEARCHING FOR INFORMATION AND RESOURCES REGARDING THEIR CHILD'S DIAGNOSIS. |
| FORM 990, PAGE 2, PART III, LINE 4A | PROGRAM: SCIENTIFIC AND CLINICAL INITIATIVES THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES. IN 2023-24, WE CO-FUNDED A GRANT OF 100,000 WITH CURE EPILEPSY ON A PROJECT AIMING TO DEVELOP A NEW REPRESENTATIVE DUP15Q MOUSE MODEL WITH VARYING LEVELS OF UBA3E (GENE), A VALUABLE TOOL FOR STUDYING THE SYNDROME AND TESTING POTENTIAL THERAPIES. WE ORCHESTRATED A LONGITUDINAL RESEARCH PROJECT DURING OUR 2023 FAMILY CONFERENCE USING FOLLOW-UP DATA COLLECTION AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q CHANGES OVER TIME. WE PROVIDED AN ADDITIONAL 38,500 TO THE NEWBORN SCREENING PROJECT, WHICH AIMS TO ADD MULTIPLE CHROMOSOME-15 CONDITIONS TO EARLY CHECK, A SCREEN FOR A VARIETY OF CONDITIONS AT BIRTH. WITH UPENN MEDICINE ORPHAN DISEASE CENTER, WE RAISED NEARLY 50,000 FOR A PROJECT FOCUSED ON UNDERSTANDING THE MOLECULAR PATHWAYS INVOLVED IN NERVOUS SYSTEM DEVELOPMENT AND FUNCTION IN MICE, PARTICULARLY IN THE CONTEXT OF AUTISM SPECTRUM DISORDERS, PROVIDING VALUABLE INFORMATION THAT CAN HELP DESIGN THERAPEUTIC STRATEGIES. THIS YEAR WE ALSO PROVIDED OVER 106,000 FOR THE GROWING LADDER LEARNING NETWORK, WHICH HOSTS A GLOBAL NETWORK OF PATIENT DATA, CONNECTS PROVIDERS TO SHARE VITAL INFORMATION, AND CONNECTS PHARMACEUTICAL PROFESSIONALS WITH LOCATIONS TO HOST CLINICAL TRIALS, WITH THE BENEFIT OF HAVING PATIENTS IN PLACE WHEN TRIALS BECOME AVAILABLE. CURRENTLY, THE 16 US AND 2 INTERNATIONAL DUP15Q CLINICS IN THE NETWORK CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. THIS COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD. |
| FORM 990, PAGE 2, PART III, LINE 4B | CONFERENCE AND SCIENCE SYMPOSIUM: THIS YEAR WE HOSTED NEARLY 600 PATIENTS, FAMILY MEMBERS, CAREGIVERS, AND PROFESSIONALS FROM AROUND THE WORLD AT THE 12TH INTERNATIONAL FAMILY CONFERENCE AND SCIENCE SYMPOSIUM DURING A WEEK IN JULY, WHERE ATTENDEES FROM 42 STATES AND 13 COUNTRIES MADE NEW PERSONAL AND PROFESSIONAL CONNECTIONS, MET ONE-ON-ONE WITH CLINICIANS AND/OR GENETIC COUNSELORS, AND ATTENDED SESSIONS ON TOPICS SUCH AS GENETICS, CLINICAL TRIALS, BEHAVIORAL HEALTH, SEIZURES, GI ISSUES, AND MUCH MORE. SEVERAL POPULAR BREAKOUT SESSIONS WERE OFFERED, INCLUDING AGE- AND RELATIONSHIP- SPECIFIC SUPPORT GROUPS AND ROUND-TABLE DISCUSSIONS WITH RESEARCHERS. 102 INDIVIDUALS WITH DUP15Q SYNDROME ATTENDED AT NO COST AND HAD THE OPPORTUNITY TO EXPERIENCE OUR WELCOME PARADE, PARTICIPATE IN ACTIVITIES WITH AN OCCUPATIONAL THERAPIST, AND VISIT WITH FRIENDS IN OUR THEMED STAFFED CARE ROOMS AND AT THE BIRTHDAY BASH. OUR SCIENCE SYMPOSIUM HOSTED 113 RESEARCH AND CLINICAL PROFESSIONALS FOR 32 SPEAKER SESSIONS WITH AN ADDITIONAL 12 ABSTRACTS PRESENTED. WE PROVIDED OVER 70,000 IN COMPED REGISTRATION FEES, HOTEL NIGHTS, AND TRAVEL ASSISTANCE VIA SCHOLARSHIPS AND EARNED REWARDS, AND ADDITIONALLY, THE ALLIANCE COVERED OVER 117,000 IN DIRECT CONFERENCE COSTS ABOVE THOSE COVERED BY REGISTRATION AND SPONSORSHIP REVENUE. |
| FORM 990, PAGE 2, PART III, LINE 4C | EDUCATION AND OUTREACH PROGRAMS: DUP15Q ALLIANCE PROVIDES PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. IN 2023 WE LAUNCHED A SEARCHABLE RESOURCE NAVIGATOR TO GUIDE FAMILIES TO NON-PROFIT ASSISTANCE, COMMUNITY SUPPORT, AND FUNDING SOURCES; WE PROVIDED 157 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS AT NO COST TO FAMILIES IN CRISIS; OUR NEW FAMILY INTAKE MANAGER MENTORED 81 NEW DUP15Q ALLIANCE FAMILIES AND PROVIDED GUIDANCE TO NAVIGATE THEIR NEW DIAGNOSIS (MANY FAMILIES FIND IT HELPFUL TO TALK TO SOMEONE WHO CAN ANSWER THEIR QUESTIONS FIRSTHAND); WE LAUNCHED AN INTERACTIVE GUIDE FOR NEWLY DIAGNOSED FAMILIES AND AN ON-DEMAND EDUCATION SECTION ON OUR WEBSITE, TO ASSIST CAREGIVERS IN GETTING THE CRITICAL INFORMATION THEY NEED IN THE DAYS AFTER RECEIVING A DIAGNOSIS OF DUP15Q SYNDROME; WE NOW HAVE 16 COMMUNITY MEMBERS THAT COMPLETED PEER- SUPPORT TRAINING WHO CAN REACH OUT TO FAMILIES IN CRISIS AND/OR MODERATE A VARIETY OF RECURRING SUPPORT GROUPS; 27 WRAPPED IN LOVE BLANKETS WERE SENT TO FAMILIES DURING A HOSPITAL STAY; 12 COMPASSION EXPERIENCE KITS WERE SENT TO TEACH SCHOOL CHILDREN ABOUT DUP15Q SYNDROME; WE BEGAN DEVELOPMENT OF A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS; AND WE PROVIDED GRANTS AND STAFF ASSISTANCE FOR 5 REGIONAL GATHERINGS OF FAMILIES AND CAREGIVERS. |
| FORM 990, PAGE 6, PART VI, LINE 11B | A COMPLETE COPY OF THE FORM 990 IS PROVIDED TO BOARD MEMBERS FOR REVIEW BEFORE FILING. |
| FORM 990, PAGE 6, PART VI, LINE 12C | THE ORGANIZATION HAS A WRITTEN CONFLICT OF INTEREST POLICY. THE DIRECTOR AND ALL OFFICERS ARE REQUIRED TO DISCLOSE ANNUALLY ANY INTERESTS THAT COULD GIVE RISE TO CONFLICTS. THE ORGANIZATION REGULARLY AND CONSISTENTLY MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY. |
| FORM 990, PAGE 6, PART VI, LINE 19 | THE ORGANIZATION OFFERS ALL OF ITS INFORMATION FOR PUBLIC INSPECTION UPON REQUEST. THE ORGANIZATION WILL REPORT ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ON THEIR WEBPAGE UPON REQUEST. |
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