Ataxia Telangiectasia Childrens Project Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
Ataxia-telangiectasia (A-T) is a genetic disease that causes loss of muscle control and balance, cancer, lung disease, and immune system problems in children and young adults, shortening their lives. The nonprofit A-T Children's Project partners with academic and industry investigators worldwide - organizing and supporting innovative research, conferences, clinical team, data platforms, and biomarker development - to optimize disease management strategies, develop new treatments, and find a cure.
- Income
- $1.8 million
- Spending
- $2.2 million
- Spent on programs
- 88%
- Reserves
- 4.3 months of spending
- Largest source of income
- donations and private grants, 94%
- Employees
- 4
- Volunteers
- 1,000
- Highest pay
- $241,755, executive director/director
Source: Form 990 for the year ending May 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Weak: 40 out of 100. Higher than 9% of charities in its peer group (science, $1m to $10m).
Reserves
20 of 35Spendable reserves would cover 4.3 months of spending.
Debt
5 of 20It owes 74% of what it owns.
Living within its means
0 of 15Spending exceeded income by 23% of income.
Income trend
0 of 15Income fell 28% on the year before.
Spending floor
15 of 1588% of spending went to programs and raising each dollar of donations cost 10 cents.
Source: Form 990 for the year ending May 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 68% of charities in its peer group (science, $1m to $10m).
Independent board
25 of 259 of 10 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
15 of 15Its accounts were audited 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 May 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)
- $1.3 million spent. Research and Clinical GrantsThe A-T Children's Project provides competitive awards for scientific and clinical research grants related to finding life-improving therapies and a cure for ataxia-telangiectasia. Scientific excellence and relevance to A-T are the paramount criteria used to select research projects. Grant award decisions are made through a careful and detailed, two-tiered peer-review selection process. Consistent with the urgency felt by all families impacted by this disease, the A-T Children's Project's current focus is on funding innovative research strategies that look at A-T in new ways and that include a clear 'yes or 'no' answer to the hypothesis rather than merely defining a mechanism. Highest priority is given to projects that, while drawing on basic discoveries, include creative strategies for suggesting and evaluating specific disease-modifying and symptomatic interventions.
- $375,320 spent. Conferences and Research SupportThe A-T Children's Project holds scientific meetings and workshops regularly as a way to encourage more cooperation between A-T research teams, to reduce redundancy in their work, and to bring scientists from different fields together to generate new research strategies. The agendas always include presentations of unpublished data and open discussions and debate. The Organization also sponsors scientific conferences whose mission falls within this realm. The Organization has found that these scientific meetings, properly orchestrated generate new research strategies, help to form new collaborations between previously competing labs, and encourage sharing of limited patient tissue samples and animal models of A-T between labs. They consistently help to accelerate research progress. Additionally, staff of the A-T Children's Project coordinate the Global A-T Family Data Platform, a patient-driven effort overseen by A-T families and experts worldwide through which health information, genetic, and potentially other types of data about people with A-T can be shared with researchers, enabling them to access important patient data from around the world quickly, securely, and efficiently, hopefully leading to new discoveries.
- $180,435 spent. Awareness and EducationThe A-T Children's Project maintains a database of people interested in receiving news and other information from the A-T Children's Project including families, extended family members, friends, caregivers, therapists, doctors, donors, volunteers, nonprofit organizations, and others interested in learning about A-T and our progress. The Organization does not charge membership fees or other fees for educational and awareness materials. Additional awareness activities include: making sure event attendees know what A-T is and the importance of the work they are supporting; conducting outreach to assist with the timely and accurate diagnosis of A-T; creating materials to help explain A-T and the Organization's research progress; answering questions and providing materials to constituents and the general public about A-T; and, maintaining a website with up-to-date information about the disease and the Organization's research projects.
- $100,432 spent. Family SupportThe A-T Children's Project developed and maintains an A-T patient registry. In addition to helping families searching for the proper diagnosis, the Organization helps them by providing support, putting them in touch with other A-T families, and assisting them with scheduling evaluations at the A-T Clinical Center at Johns Hopkins. The families contact the Organization through email, phone, website, and social media platforms such as Facebook. Each newly diagnosed family gets an information package including the Caring for People with A-T handbook. The Organization typically corresponds and speaks with parents often to help them understand this rare disease and what it means for their families throughout their children's lives. A-T families and extended family members also receive information updating them on current A-T biomedical and clinical research happenings. The Organization also publishes and distributes their Caring for People with A-T handbook free of charge. This handbook gives specific medical information about A-T for families and caregivers. The Organization also plans and hosts Caregiver Weekends periodically to give parents and other caregivers opportunities to formally and informally build connections; speak openly about sensitive subjects related to A-T; and, learn directly from clinicians and researchers.
Source: Form 990 for the year ending May 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 September 7, 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 September 30, 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 September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending May 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since July 2002.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 7, 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.