Civic Intelligence

Chelseas Hope Lafora Children Rese

EIN 27-1008382 • 501(c)3 • Lexington, KY

Profile

To raise funds for research, treatment, and ultimately, a cure-for those affected by lafora.

C/O K Donohue 976 Maywick DrLexington, KY 40504

www.chelseashope.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

60th percentile

0.00x

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

501(c)3 • <$500k nonprofits • Source year 2024

Liabilities / Revenue

62nd percentile

0.00x

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

501(c)3 • <$500k nonprofits • Source year 2024

Net Margin

7th percentile

-164%

Higher net margin than 7% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

96th percentile

$66,796

Higher top officer pay than 96% of similar nonprofits.

Top officer pay equals 25.9% of source-year revenue.

501(c)3 • <$500k nonprofits • Source year 2024

Asset Growth

19th percentile

-54%

Faster asset growth than 19% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Revenue Growth

44th percentile

-7.9%

Faster revenue growth than 44% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets60th percentile

Assets

Down

$360,014

Down $421,910 (-54%) from 2023

Liabilities

Flat

$0

Flat from 2023

Net Assets

Down

$360,014

Down $421,910 (-54%) from 2023

Operations
Liabilities / Revenue62nd percentileNet Margin7th percentile

Revenue

Down

$257,587

Down $22,115 (-7.9%) from 2023

Expenses

Up

$679,497

Up $481,903 (+244%) from 2023

Net Income

Down

-$421,910

Down $504,018 (-614%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth19th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$800K$600K$400K$200K$0Assets 2012: $50,812Net Assets 2012: $50,8122012Assets 2013: $58,857Net Assets 2013: $58,8572013Assets 2014: $38,134Net Assets 2014: $38,1332014Assets 2015: $70,804Net Assets 2015: $70,8042015Assets 2016: $61,367Net Assets 2016: $61,3672016Assets 2017: $52,175Net Assets 2017: $52,1752017Assets 2021: $272,210Liabilities 2021: $0Net Assets 2021: $272,2102021Assets 2022: $658,282Liabilities 2022: $0Net Assets 2022: $658,2822022Assets 2023: $781,924Liabilities 2023: $0Net Assets 2023: $781,9242023Assets 2024: $360,014Liabilities 2024: $0Net Assets 2024: $360,0142024

Highlighted filing

2024

Assets$360,014
Liabilities$0
Net Assets$360,014
Open 2024 Filing

Operations Trend

Revenue Growth44th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.0M$500K$0-$500KRevenue 2012: $58,118Expenses 2012: $38,032Net Income 2012: $20,0862012Revenue 2013: $167,752Expenses 2013: $159,707Net Income 2013: $8,0452013Revenue 2014: $62,233Expenses 2014: $82,957Net Income 2014: -$20,7242014Revenue 2015: $73,303Expenses 2015: $40,633Net Income 2015: $32,6702015Revenue 2016: $70,679Expenses 2016: $80,116Net Income 2016: -$9,4372016Revenue 2017: $46,185Expenses 2017: $55,377Net Income 2017: -$9,1922017Revenue 2021: $260,006Expenses 2021: $35,916Net Income 2021: $224,0902021Revenue 2022: $652,148Expenses 2022: $265,056Net Income 2022: $387,0922022Revenue 2023: $279,702Expenses 2023: $197,594Net Income 2023: $82,1082023Revenue 2024: $257,587Expenses 2024: $679,497Net Income 2024: -$421,9102024

Highlighted filing

2024

Revenue$257,587
Expenses$679,497
Net Income-$421,910
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$360,014
Liabilities
$0
Net assets
$360,014
Revenue
$257,587
Expenses
$679,497
Net income
-$421,910
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$3.60$0.00$3.60$2.58$6.79$4.22
2023Detailed filing. Detailed filing data is available for this year.$7.82$0.00$7.82$2.80$1.98$0.82
2022Detailed filing. Detailed filing data is available for this year.$6.58$0.00$6.58$6.52$2.65$3.87
2021Detailed filing. Detailed filing data is available for this year.$2.72$0.00$2.72$2.60$0.36$2.24
2017Detailed filing. Detailed filing data is available for this year.$0.52$0.52$0.46$0.55$0.09
2016Detailed filing. Detailed filing data is available for this year.$0.61$0.61$0.71$0.80$0.09
2015Detailed filing. Detailed filing data is available for this year.$0.71$0.71$0.73$0.41$0.33
2014Detailed filing. Detailed filing data is available for this year.$0.38$0.38$0.62$0.83$0.21
2013Detailed filing. Detailed filing data is available for this year.$0.59$0.59$1.68$1.60$0.08
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.51$0.51$0.58$0.38$0.20
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
May 8, 2025
Return Version
2024v5.0
Gross Receipts
$257,587
Mission and Program Overview

Mission

To aid and assist the lafora researchers by raising funds for research, treatment and cures for those affected by lafora. In addition, our goal is to raise awareness about lafora and to provide connection and assistance for families in the form of education, emotional and general support.

The mission of Chelsea's Hope is to improve the lives of those affected by Lafora disease and to help accelerate the development of treatments. We do this by raising awareness, hosting educational events, and supporting research efforts for Lafora disease.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$781,924$309,144▼ $472,780
Savings and Temporary Cash Investments$0$50,870▲ $50,870
Accounts Receivable$0$0→ $0
Other Notes and Loans Receivable, Net$0$0→ $0
Pledges and Grants Receivable$0$0→ $0
Receivable From Disqualified Prsn$0$0→ $0
Receivables From Officers Etc$0$0→ $0
Investments Other Securities$0$0→ $0
Investments Program Related$0$0→ $0
Investments in Publicly Traded Securities$0$0→ $0
Land, Buildings, and Equipment, Net$0--
Intangible Assets$0$0→ $0
Inventories for Sale or Use$0$0→ $0
Loans From Officers Directors$0$0→ $0
Prepaid Expenses and Deferred Charges$0$0→ $0
Total Assets$781,924$360,014▼ $421,910
Other Assets Total$0$0→ $0
Liabilities
Accounts Payable and Accrued Expenses$0$0→ $0
Grants Payable$0$0→ $0
Mortgage Notes Payable Secured by Investment Property$0$0→ $0
Unsecured Notes Loans Payable$0$0→ $0
Other Liabilities$0--
Deferred Revenue$0$0→ $0
Escrow Account Liability$0$0→ $0
Tax Exempt Bond Liabilities$0$0→ $0
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Net Assets With Donor Restrictions$0$192,000▲ $192,000
Net Assets Without Donor Restrictions$781,924$168,014▼ $613,910
Total Net Assets Fund Balance$781,924$360,014▼ $421,910
Total Liabilities and Net Assets / Fund Balance$781,924$360,014▼ $421,910
Compensation and Service Providers
Top Officer Pay96th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Lena IsmailExecutive Director (Top Management)FT$66,796$66,796
Katherine DonohueFinance Director & Executive Director (Top Management)FT$53,004$53,004

Board Members and Trustees

NameTitle
Frank HarrisPresident
Jenifer MerriamVice President
Nadia IsmailAt-Large Member, Board of Directors
Niki MarkouAt-Large Member, Board of Directors
Meredith WilliamsSecretary
Sheila BarterTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$248,328
Program Service Revenue
$0
Investment Income
$9,259
Other Revenue
$0
All Other Contributions
$248,328
Change in Net Assets
$-421,910
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$407,609
Grants and Similar Amounts Paid$152,088
Salaries, Compensation, and Employee Benefits$119,800
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$170,487$0$0$170,487
Grants to Domestic Orgs$150,000--$150,000
Current Officers, Directors, Trustees, and Key Employees$107,820$11,980$0$119,800
Other Expenses$40,000$0$0$40,000
Advertising$5,472$0$0$5,472
Office Expenses$0$2,098$0$2,098
Grants to Domestic Individuals$2,088--$2,088
Information Technology$1,214$0$0$1,214
Fees for Services Accounting$241$775$0$1,016
All Other Expenses$0$144-$144
Total Functional Expenses$664,500$14,997$0$679,497
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of Texas Southwestern Medical CenterDallas, TX-Lafora Clinical Trial$150,000

International Summary

Offices
0
Employees
1
Spending
$40,000

International Compliance

Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
East Asia and the PacificProgram ServicesFamily Support Group Activities01$40,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$0
Fundraising Gross Income$0
Gaming Direct Expenses$0
Gaming Gross Income$0
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
Loans from Officers, Directors, Trustees, and Key Employees$0$0→ $0
Receivables from Disqualified Persons$0$0→ $0
Receivables from Officers, Directors, Trustees, and Key Employees$0$0→ $0
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Backup withholding compliance
Yes
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
Yes
Other officer compensation reviewed
Yes
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 2

“Reporting Family Relationship (Part VIA, Line 2): FAMILY RELATIONSHIP BETWEEN BOARD OF DIRECTORS MEMBER NADIA ISMAIL AND EXECUTIVE DIRECTOR LENA ISMAIL”

Form 990, Part VI, Section A, Line 4

“Reporting Bylaw Revisions in 2024 (Part VIA, Line 4): BOARD OF DIRECTORS REVISED BYLAWS TO REDEFINE ROLE OF EACH OF THE OFFICERS IN PREPARATION TO HIRE STAFF IN 2025, ADJUSTED THE NUMBER OF ANNUAL REQUIRED MEETINGS, AND DEFINED THE TASKS TO BE DELEGATED TO THE EXECUTIVE DIRECTOR.”

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

“Form 990 Governing Body Review (Part VIB, Line 11) THE 990 IS REVIEWED BY THE FINANCE COMMITTEE AND PRESENTED TO THE BOARD OF DIRECTORS, THEN SIGNED BY THE EXECUTIVE DIRECTOR”

Form 990, Part VI, Section B, Line 12C

“Conflict of Interest Policy Review (Part VIB, Line 12c) POLICY IS ON FILE AND REVIEWED ANNUALLY BY ALL MEMBERS OF THE BOARD OF DIRECTORS”

Form 990, Part VI, Section B, Line 15

“CEO, executive director, and top management compensation (Part VIB, Line 15) COMPENSATION IS REVIEWED ANNUALLY BY PERSONNEL COMMITTEE AND COMPARED AGAINST OTHER SIMILAR SIZED NON-PROFITS AND RECOMMENDATIONS PRESENTED TO THE BOARD OF DIRECTORS FOR FINAL APPROVAL.”

Form 990, Part VI, Section C, Line 19

“Governing document, etc, available to the public (Part VI, Line 19) DOCUMENTS ARE AVAILABLE THROUGH THE CANDID FOUNDATION DIRECTORY, ALSO AVAILABLE UPON REQUEST”

Filing and Contact Details

Filer

Filer Name
Chelseas Hope Lafora Children Research Fund
EIN
27-1008382
Phone
8599130575
Address
C/O K Donohue 976 Maywick Dr, Lexington, KY 40504

Signing Officer

Name
Katherine Donohue
Title
Executive Director
Phone
8599130575
Signed
2025-05-08

Organization Details

Principal Officer
Katherine Donohue
Formed
2009
Legal Domicile
CA
Voting Board Members
6
Independent Board Members
6
Employees
0
Volunteers
12
Supplemental Narrative

Additional Explanations

Form 990, Part III, Line 4D

“List of Other Program Service Activities and Expenses (Part III, Line 4d) $189,003 - OFFICER COMPENSATION & INDEPENDENT CONTRACTORS SUPPORTING PROGRAM SERVICES $51,933 - LAFORA BIOMARKER WORKSHOPS $40,000 - LAFORA FAMILY SUPPORT GROUP MEETINGS $31,971 - CAREGIVER SURVEY AND REGISTRY DEVELOPMENT AND MAINTENANCE $6,927 - PROGRAM SERVICE ACCOUNTING, PROMOTION, AND IT EXPENSES $2,088 - FAMILY GRANT, FUNDS FOR MEDICAL ASSISTANCE”

Form 990, Part IX, Line 11G

“List of Other Fees for Program Service Expenses (Part IX, Line 11g) CONTRACT LABOR FOR SUPPORT OF PROGRAM SERVICES: $170,487”

Raw XML AppendixShowing 400 of 653 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Form990PartVIISectionAGrp/PersonNm5Meredith Williams
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IRS990/Form990PartVIISectionAGrp/TitleTxt0Executive Director (Top Management)
IRS990/Form990PartVIISectionAGrp/TitleTxt1Finance Director & Executive Director (Top Management)
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IRS990/Form990PartVIISectionAGrp/TitleTxt3Vice President
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IRS990/Form990PartVIISectionAGrp/TitleTxt5Secretary
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IRS990/MissionDesc0The mission of Chelsea's Hope is to improve the lives of those affected by Lafora disease and to help accelerate the development of treatments. We do this by raising awareness, hosting educational events, and supporting research efforts for Lafora disease.
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IRS990/OtherExpensesGrp/Desc0Annual Symposium
IRS990/OtherExpensesGrp/Desc1Biomarker Workshops
IRS990/OtherExpensesGrp/Desc2Caregiver Survey and Registry
IRS990/OtherExpensesGrp/Desc3Family Support Group Assistance
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IRS990/PrincipalOfficerNm0Katherine Donohue
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IRS990/ProgSrvcAccomActy2Grp/Desc0Annual Lafora Science Symposium: Our organization hosts an annual science symposium that brings together families, scientists, clinicians, patient advocates, and industry representatives to accelerate the development of therapies for Lafora disease. We hosted 70 in-person and 50 virtual participants for our 3-day event in San Diego.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Funding Lafora Biomarker Screenings and Repurposed Drug Screenings: Contracted the services of labs at the University of Florida and the Instituto de Biomedicina de Valencia to perform screenings for Lafora disease biomarkers and drugs that could be repurposed to treat patients with Lafora disease. We will receive the results from these screens in 2025 and will use the information to support future Lafora research and drug development.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0OFFICER COMPENSATION & INDEPENDENT CONTRACTORS SUPPORTING PROGRAM SERVICES
IRS990/ProgSrvcAccomActyOtherGrp/Desc1LAFORA BIOMARKER WORKSHOPS
IRS990/ProgSrvcAccomActyOtherGrp/Desc2LAFORA FAMILY SUPPORT GROUP MEETINGS
IRS990/ProgSrvcAccomActyOtherGrp/Desc3CAREGIVER SURVEY AND REGISTRY DEVELOPMENT AND MAINTENANCE
IRS990/ProgSrvcAccomActyOtherGrp/Desc4PROGRAM SERVICE ACCOUNTING, PROMOTION, AND IT EXPENSES
IRS990/ProgSrvcAccomActyOtherGrp/Desc5FAMILY GRANT, FUNDS FOR MEDICAL CARE ASSISTANCE
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IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt240000

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