| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
||||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 484,663 | 343,299 | 385,860 | 413,016 | 597,205 | 2,224,043 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf .... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 484,663 | 343,299 | 385,860 | 413,016 | 597,205 | 2,224,043 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 159,495 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 2,064,548 | |||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 484,663 | 343,299 | 385,860 | 413,016 | 597,205 | 2,224,043 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 8,897 | 23,361 | 32,258 | |||
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 28,701 | 502 | 29,203 | |||
| 11 | Total support. Add lines 7 through 10 | 2,285,504 | |||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
| Calendar year (or fiscal year beginning in) | (a) 2021 | (b) 2022 | (c) 2023 | (d) 2024 | (e) 2025 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6 | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975 | ||||||
| c | Add lines 10a and 10b | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
|||||
| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6Total annual distributions. Add lines 1 through 5. | 6 | |
|
7
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
7 | |
| 8 Distributable amount for 2025 from Section C, line 6 | 8 | |
| 9 Line 7 amount divided by Line 8 amount | 9 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2025 |
(iii) Distributable Amount for 2025 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2025 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2025 (reasonable cause required-- explain in Part VI).
See instructions. |
||||
| 3 Excess distributions carryover, if any, to 2025: | ||||
| a From 2020....... | ||||
| b From 2021....... | ||||
| c From 2022....... | ||||
| d From 2023....... | ||||
| e From 2024....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2025 distributable amount | ||||
|
i
Carryover from 2020 not applied (see instructions) |
||||
| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2025 from Section D, line 6: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2025 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2025, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
6
Remaining underdistributions for 2025. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
7 Excess distributions carryover to 2026. Add lines 3j and 4c. |
||||
| 8 Breakdown of line 7: | ||||
| a Excess from 2021..... | ||||
| b Excess from 2022..... | ||||
| c Excess from 2023..... | ||||
| d Excess from 2024..... | ||||
| e Excess from 2025..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|
| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
|---|---|
| Form 990 governing body review Part VI line 11 | The form 990 is submitted in draft form to The Board of Directors for review and the form 990 is approved by the vice president and treasurer prior to submission. |
| Conflict of interest policy compliance Part VI line 12c | The Foundation has a conflict-of-interest policy which is consistently reviewed, monitored, and enforced on an annual basis. |
| Governing documents etc available to public Part VI line 19 | These documents are available upon request. |
| List of other fees for services expenses Part IX line 11g | Communications: $14,916 Science: $66,987 Fundraising: $61,474 |
| Part III response or note to any other line in Part III | (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: |
| General explanation attachment | Mission Statement: To find specific treatment options and a cure for CACNA1A patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of CACNA1A-linked diseases. |
| Software ID: | |
| Software Version: |