Cacna1a Foundation Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission)
- Income
- $710,127
- Spending
- $390,485
- Spent on programs
- 66%
- Reserves
- 28.6 months of spending
- Largest source of income
- donations and private grants, 84%
- Employees
- 1
- Volunteers
- 35
- Highest pay
- $42,073, executive director
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
Strong: 100 out of 100. Higher than 81% of charities in its peer group (diseases, $250k to $1m).
Reserves
35 of 35Spendable reserves would cover 28.6 months of spending.
Debt
20 of 20It owes 8% of what it owns.
Living within its means
15 of 15Income exceeded spending by 45% of income.
Income trend
15 of 15Income rose 53% on the year before.
Spending floor
15 of 1566% of spending went to programs and raising each dollar of donations cost 14 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: 92 out of 100. Higher than 83% of charities in its peer group (diseases, $250k to $1m).
Independent board
25 of 2510 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
0 of 5Reports no independent review process for its chief executive's pay.
Independent check of accounts
12 of 15Its accounts were reviewed or compiled by an independent accountant, but not audited.
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)
- $171,163 spent. Research: See Schedule O.
- $58,346 spent. Conference and Other Programs: See Schedule O.
- $26,788 spent. Outreach: See Schedule O.
- (ii) Develop a more comprehensive framework for classifying CACNA1A variants; (iii) Explore new approaches to understand and target the pathophysiology (disease mechanisms) of CACNA1A-related disorders; and (iv) Identify the components needed to build a robust proof-of-concept package to attract industry partnerships. Program Service Accomplishments: OUTREACH: 1. Supporting Families at the Moment it Matters Most: We launched the New to CACNA1A Toolkit, a free resource designed to support families during the overwhelming period immediately following diagnosis. This toolkit provides clear, easy-to-understand information about CACNA1A-related disorders, guidance on navigating medical care, and practical materials families can share with their clinicians. 2. Building a Global Community of Support: We expanded our Global Ambassador Program, to reach families across five countries and three U.S. states. Our Global Ambassadors are parents and caregivers of individuals with CACNA1A-related disorders, and they serve as trusted local connections, helping families find one another, access resources, and engage with the Foundations programs and research opportunities. 3. Advancing Care Through a Dedicated CACNA1A Clinic: In March, we celebrated the opening of the Multidisciplinary Clinic for CACNA1A-Related Disorders at UTHealth Houstonthe first program of its kind dedicated to coordinated care for the full spectrum of CACNA1A variants. 4. Growing Our CACNA1A Community: In 2025, we significantly expanded the number of CACNA1A families engaged with our work, by adding 194 new families to our contact registry and increasing the total to 546 families. The growth in our community strengthens the foundation for research and therapeutic development. 5. Mobilizing a Global Community for Impact: In May, our community came together for the 5th Annual CACNA1A 5K Run, Walk & Roll. Nearly 800 participants across 40 teams, representing 29 states and 9 countries, raised an inspiring $150,000 to accelerate CACNA1A research and support families worldwide. This event demonstrated the power of community, showing that every step we take brings us closer to new treatments and a brighter future. 6. Sharing CACNA1A Research with a Global Audience: We partnered with Rare Awareness Radio podcast to highlight the latest research and clinical advances in CACNA1A-related disorders. These episodes help raise awareness, accelerate collaboration, and bring CACNA1A research to a broader audience. RESEARCH: 1. Making CACNA1A Visible in the Healthcare System: In July, we secured a dedicated ICD-10 medical code for CACNA1A-related Neurodevelopmental Disorder (QA0.0102). This code supports accurate clinical documentation, facilitates appropriate insurance processing, and strengthens the quality of clinical and research data. 2. Convening the Global CACNA1A Research Network: In November, we convened our Global CACNA1A Research Network at its 4th Annual Research Roundtable, virtually bringing together more than 70 researchers, clinicians, and industry experts from around the world. This largest-ever gathering aligned the field around a shared goal: accelerating the path to safe and effective treatments. 3. Expanding Our Preclinical Research Toolbox: We expanded our preclinical research toolbox with the development of 5 additional iPSC (induced pluripotent stem cell) lines and 2 isogenic controls, which allow researchers to study CACNA1A-related disorders in the lab with greater precision. We also funded the creation of a new Cav2.1 antibody. 4. Investing in New Therapeutic Approaches: We continued to advance potential treatments by supporting innovative research strategies. These targeted approaches are helping move the field closer to new treatments for individuals affected by CACNA1A-related disorders. 5. Advancing CACNA1A Research Through New Grants: We awarded grants to accelerate research into CACNA1A-related disorders. These awards helped advance the Foundations mission to move promising science closer to therapies for families worldwide. 6. Expanding Patient Participation in Research: We increased patient participation in our data collection and research studies. De-identified, consented patient data enhances the depth and quality of information available to researchers and clinicians to develop treatments and design clinical trials. CONFERENCE & OTHER PROGRAMS:
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 November 6, 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 May 2020.
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 November 4, 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.