Chelseas Hope Lafora Children Research Fund
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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.
- Income
- $453,936
- Spending
- $495,276
- Spent on programs
- 95%
- Reserves
- 4.2 months of spending
- Largest source of income
- donations and private grants, 100%
- Employees
- 0
- Volunteers
- 20
- Highest pay
- $53,500, finance director & executive director (top management)
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 74 out of 100. Higher than 30% of charities in its peer group (medical research, $250k to $1m).
Reserves
20 of 35Spendable reserves would cover 4.2 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
4 of 15Spending exceeded income by 9% of income.
Income trend
15 of 15Income rose 76% on the year before.
Spending floor
15 of 1595% of spending went to programs and raising each dollar of donations cost 1 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 91 out of 100. Higher than 76% of charities in its peer group (medical research, $250k to $1m).
Independent board
25 of 257 of 7 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
6 of 15Its accounts were not audited or reviewed by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $310,000 spent. Funding a Clinical Safety Study: Our organization provided grants in total of $310,000 to the University of Texas Southwestern Medical Center to fund their FDA-approved safety study for ION283, a drug with the potential to treat patients with Lafora Disease. Our efforts ensured that enough funds were available to enroll all 10 patients in the study.
- $110,581 spent. Family Support Services: Our staff and interns receive compensation in order to provide families with a variety of support resources. In 2025, we hosted 16 committee meetings to plan outreach, financing, and family support projects, sent 14 newsletter communications, produced 2 publications and 5 research simplifications, surveyed priorities of over 60 families through our caregiver registry, connected more than 30 families through regular family support meetings, and hosted 15 virtual workshops to identify biomarkers and clinical best practices for treating Lafora. Our organization also maintains software and website subscriptions to disseminate these resources.
- $47,423 spent. Annual 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 101 in-person and 193 virtual participants for our 3-day event in Valencia.
- $299 spent. LAFORA AWARENESS EVENT FOR RARE DISEASE DAY
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since January 2010.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.