Civic Intelligence

Cadasil Association

990 • Fiscal year 2023 • EIN 45-5242623

Jan 01, 2023 to Dec 31, 2023 • Filed on Apr 30, 2024

Organization Profilecurecadasil.org
10 Schalks Crossing Road 501APlainsboro, NJ 08536

(401) 684-2760

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

58th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Liabilities / Revenue

59th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Net Margin

5th percentile

-139%

Higher net margin than 5% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Top Officer Pay

78th percentile

$0

Higher top officer pay than 78% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2023 filings • 501(c)3 • <$500k nonprofits • Source year 2023

Asset Growth

23rd percentile

-20%

Faster asset growth than 23% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Revenue Growth

5th percentile

-81%

Faster revenue growth than 5% of similar nonprofits.

2023 filings • 501(c)3 • <$500k nonprofits • Annualized from 2022 to 2023

Balance Sheet
Liabilities / Assets58th percentile

Assets

Down

$271,390

Down $68,846 (-20%) from 2022

Net Assets

Down

$271,390

Down $68,846 (-20%) from 2022

Liabilities

Flat

$0

Flat from 2022

Revenue And Expenses
Liabilities / Revenue59th percentileNet Margin5th percentile

Revenue

Down

$49,648

Down $207,068 (-81%) from 2022

Expenses

Up

$118,494

Up $89,594 (+310%) from 2022

Net Income

Down

-$68,846

Down $296,662 (-130%) from 2022

Historical Trend

Balance Sheet Trend

Asset Growth23rd percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$400K$300K$200K$100K$0Assets 2021: $113,920Net Assets 2021: $113,9202021Assets 2022: $340,236Liabilities 2022: $0Net Assets 2022: $340,2362022Assets 2023: $271,390Liabilities 2023: $0Net Assets 2023: $271,3902023Assets 2024: $244,477Liabilities 2024: $0Net Assets 2024: $244,4772024

Highlighted filing

2023

Assets$271,390
Liabilities$0
Net Assets$271,390
Open 2023 Filing

Operations Trend

Revenue Growth5th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$300K$200K$100K$0-$100KRevenue 2021: $35,977Expenses 2021: $23,057Net Income 2021: $12,9202021Revenue 2022: $256,716Expenses 2022: $28,900Net Income 2022: $227,8162022Revenue 2023: $49,648Expenses 2023: $118,494Net Income 2023: -$68,8462023Revenue 2024: $150,106Expenses 2024: $177,019Net Income 2024: -$26,9132024

Highlighted filing

2023

Revenue$49,648
Expenses$118,494
Net Income-$68,846
Open 2023 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2023 to Dec 31, 2023
Signed
Apr 30, 2024
Return Version
2023v5.0
Gross Receipts
$49,648
Mission and Program Overview

Mission

The mission of CureCADASIL is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping all touched by CADASIL, improving education available on CADASIL and promote and support research for this rare disease.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$314,153$245,268▼ $68,885
Savings and Temporary Cash Investments$26,083$26,122▲ $39
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$340,236$271,390▼ $68,846
Other Assets Total-$0-
Liabilities
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$130,236$138,669▲ $8,433
Net Assets With Donor Restrictions$210,000$132,721▼ $77,279
Total Net Assets Fund Balance$340,236$271,390▼ $68,846
Total Liabilities and Net Assets / Fund Balance$340,236$271,390▼ $68,846
Compensation and Service Providers
Top Officer Pay78th percentile

Board Members and Trustees

NameTitle
Bertram KasiskePresident
Sandra TalbirdTrustee
Vinita BahlTrustee
Jane GuntherResearch Ofc.
Pedro De LencastreSecretary
Debra RobinsonTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$49,609
Program Service Revenue
$0
Investment Income
$39
Other Revenue
$0
All Other Contributions
$49,609
Change in Net Assets
$-68,846
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$108,494
Grants and Similar Amounts Paid$10,000
Total Fundraising Expense$1,366
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$82,196$1,938-$84,134
Fees for Services Accounting-$11,045-$11,045
Grants to Domestic Orgs$10,000--$10,000
Information Technology$1,279$543$1,366$3,188
Insurance-$1,250-$1,250
Travel$1,184--$1,184
Other Expenses$574$371-$371
All Other Expenses-$60-$60
Office Expenses-$25-$25
Total Functional Expenses$95,412$21,716$1,366$118,494
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of PennsylvaniaPhiladelphia, PA-Rare Disease Research Bike Ride$10,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
No
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
Yes
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 4

“DOI/COI and Travel Reimbursement”

Form 990, Part VI, Section B, Line 11B

“No review was or will be conducted.”

Form 990, Part VI, Section C, Line 19

“No documents available to the public.”

Filing and Contact Details

Filer

Filer Name
Cadasil Association
EIN
45-5242623
Phone
4016842760
Address
10 SCHALKS CROSSING ROAD 501A, PLAINSBORO, NJ 08536

Signing Officer

Name
Debra Robinson
Title
Treasurer
Signed
2024-04-30
Discuss with paid preparer
Yes

Organization Details

Legal Domicile
Nj
Voting Board Members
6
Independent Board Members
6
Employees
0
Volunteers
13

Preparer

Firm
Gregg S Bossen CPA Pc
Address
50 LENOX POINT SUITE C, ATLANTA, GA 30324
Preparer
Gregg S Bossen
Phone
4048929513
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IRS990/Desc0CADASIL is an hereditary small vessel disease caused by mutations in the Notch3 gene. These mutations lead to progressive changes in the small brain arteries and reduced blood flow to the brain. We aim to share these CADASIL vessel-on-chip with the international CADASIL research community to promote CADASIL research. We aim to unite patients and the medical community toward the common goal of treatments and ultimately a cure for this rare genetic disease, by promoting communication, advocacy, research, and education.For the year ended December 31, 2023 the following programs and activities were operated:webinars for patients and investigators; a meeting that brought patients, family members, and caregivers together with investigators in an in-person meeting on June 24; quarterly newsletters to inform the CADASIL community; and participation in several rare disease educational meetings:-The Chan Zuckerberg Initiative (CZI) Neurodegeneration Challenge Network meeting June 5-9-The United Leukodystrophy Foundation annual meeting June 22-24-Annual Global Genes meeting September 19-20-The CZI Science in Society meeting September 20-23-The National Organization of Rare Diseases meeting October 16-17Maintaining and improving an educational website (www.cureCADASIL.org)Producing an educational brochure for patients and families on CADASILActivities directed toward research to find a treatment for CADASIL included:hosting a monthly meeting of key investigators to encourage their collaboration and research in CADASIL (the CADASIL Disease Modeling Group)advising clinical investigators and recruiting participants for 3 observational studies being conducted in the United States:-The CADASIL Consortium National Institutes of Health (NIH) Study-The National Heart Lung and Blood Institute/NIH CADASIL Study-The CZI-sponsored CADASIL study at Mt. Sinai Medical CenterConducting a search to find a registry platform to replace and improve a cureCADASIL- sponsored natural history study.Our major fundraising activity was the Million Dollar Bike Ride June10, a fundraising effort for research sponsored by the University of Pennsylvania Orphan Disease Center. All proceeds went to fund a grant for research in CADASIL.Finally, we continued to provide on-going patient and family support by answering questions sent to us online and at meetings, and connecting patients to physicians who treat patients with CADASIL.
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IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
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IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
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IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt012500
IRS990ScheduleA/Total509Grp/TotalAmt0118818
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt049648
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt056716
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt012500
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt0118864
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd0true
IRS990ScheduleI/GrantRecordsMaintainedInd0false
IRS990ScheduleI/RecipientTable/CashGrantAmt010000
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0Rare Disease Research Bike Ride
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0UNIVERSITY OF PENNSYLVANIA
IRS990ScheduleI/RecipientTable/RecipientEIN0231352685
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt03601 WALNUT ST
IRS990ScheduleI/RecipientTable/USAddress/CityNm0PHILADELPHIA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0PA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd019104
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0DOI/COI and Travel Reimbursement
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1No review was or will be conducted.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2No documents available to the public.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section A, Line 4
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part VI, Section C, Line 19
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IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TerminateOperationsInd0false
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IRS990/TotalAssetsEOYAmt0271390
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IRS990/TotalContributionsAmt049609
IRS990/TotalEmployeeCnt00
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IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt021716
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt095412
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IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt0271390
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IRS990/TravelGrp/TotalAmt01184
IRS990/TrnsfrExmptNonChrtblRltdOrgInd0false
IRS990/TypeOfOrganizationCorpInd0X
IRS990/UnrelatedBusIncmOverLimitInd0false
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IRS990/USAddress/CityNm0PLAINSBORO
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IRS990/VotingMembersGoverningBodyCnt06
IRS990/VotingMembersIndependentCnt06
IRS990/WebsiteAddressTxt0curecadasil.org
IRS990/WhistleblowerPolicyInd0false
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ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/FederatedAssuranceLevelCd0FAL1
ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/IdentityAssuranceLevelCd0IAL1
ReturnHeader/AdditionalFilerInformation/TrustedCustomerGrp/TrustedCustomerCd02
ReturnHeader/BuildTS02023-04-26 12:10:37Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd0true
ReturnHeader/BusinessOfficerGrp/PersonNm0DEBRA ROBINSON
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0Treasurer
ReturnHeader/BusinessOfficerGrp/SignatureDt02024-04-30
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0CADASIL ASSOCIATION
ReturnHeader/Filer/BusinessNameControlTxt0CADA
ReturnHeader/Filer/EIN0455242623
ReturnHeader/Filer/PhoneNum04016842760
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ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm0ATLANTA
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/StateAbbreviationCd0GA
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/ZIPCd030324
ReturnHeader/PreparerPersonGrp/PhoneNum04048929513
ReturnHeader/PreparerPersonGrp/PreparerPersonNm0Gregg S Bossen
ReturnHeader/ReturnTs02024-04-30T07:47:49-07:00
ReturnHeader/ReturnTypeCd0990
ReturnHeader/SigningOfficerGrp/PersonFullName/PersonFirstNm0DEBRA
ReturnHeader/SigningOfficerGrp/PersonFullName/PersonLastNm0ROBINSON

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2023 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$271,390
Liabilities
$0
Net assets
$271,390
Revenue
$49,648
Expenses
$118,494
Net income
-$68,846
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.44$0.00$2.44$1.50$1.77$0.27
2023Detailed filing. Detailed filing data is available for this year.$2.71$0.00$2.71$0.50$1.18$0.69
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.40$0.00$3.40$2.57$0.29$2.28
2021Detailed filing. Detailed filing data is available for this year.$1.14$1.14$0.36$0.23$0.13