2023-05-15T17:14:16-04:00 2022-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2022-01-01 844985747 CACNA1A Foundation CACN 31 Point Road Norwalk CT 06854 Sunitha Malepati Vice President 2039696552 2023-05-15 true Sunitha Malepati John Mullins P01429307 2027706371 2023-05-15 0 00 AAL1 IAL1 2022 2023-04-26 12:10:37Z Sunitha Malepati 343299 false X www.cacna1a.org X 2020 CT To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission) 5 5 0 16 0 0 484663 343299 0 0 0 484663 343299 100000 53237 0 0 0 10335 68599 350168 168599 403405 316064 -60106 488082 876537 75000 123561 413082 752976 To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission) false false 165659 53237 Our research program invested in three major projects this year: growing participants in our Natural History Study at the Chung Lab; collecting blood samples for the development of iPSC lines for our biorepository to help researchers study the mechanism of disease; and developing a novel CACNA1A variant database that includes comprehensive information on CACNA1A variants, educational resources and natural history study data. 130193 We hosted the first in-person Creating Connections Community Conference, providing an opportunity for families to meet in person for the first time. It was also an opportunity for leading clinicians and researchers to share their work, answer questions and connect with our families. 79555 We hosted the first in-person CACNA1A Research Roundtable with over 35 researchers, clinicians and industry representatives to exchange ideas to accelerate the path to treatment. The Roundtable focused on identifying the critical gaps in understanding CACNA1A-related disorders; developing methods to obtain that essential knowledge; and accelerating progress towards therapeutic development that will have the greatest impact on our CACNA1A patient community. 375407 true true false false false false false false false false false false false false false false false false false false false false false false false false false true false false false false false false false false false false false false false false false false false false false true 5 0 true 0 false false false false false false false false false false false false X 5 5 false false false false false false false true true false false true true true true true true false false false AK AL AR CA CO CT FL HI KS KY MD ME MI MN MS NJ NM NV NY OH OK OR RI SC UT VA WA WI WV X X X The Organization 2039696552 31 Point Road Norwalk CT 06854 X Hala Mirza Director 2.00 0.00 X 0 0 0 Amy Junge Secretary 10.00 0.00 X X 0 0 0 Carolyn Anderson Former Secretary 10.00 0.00 X X 0 0 0 Lisa Manaster President 40.00 0.00 X X 0 0 0 Sunitha Malepati Vice President 40.00 0.00 X X 0 0 0 Allison Buchner Treasurer 5.00 0.00 X X 0 0 0 0 0 0 0 false false false 343299 343299 343299 0 0 0 X 53237 53237 9231 9231 67048 67008 40 5593 5593 4174 130 1327 2717 18601 6664 4319 7618 6384 6384 190897 190897 3108 362 2746 Other 45132 45132 403405 375407 17663 10335 488082 654290 222247 488082 876537 75000 123561 75000 123561 X 213082 365516 200000 387460 413082 752976 488082 876537 X -60106 400000 X true X false true false X 192925 484663 343299 1020887 192925 484663 343299 1020887 1020887 1020887 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true Columbia University Board of Truste 622 West 113th Street New York NY 10025 135598093 501c3 25000 Natural History Study Cleveland Clinic 9500 Euclid Ave Cleveland OH 44195 912153073 501c3 27500 CACNA1A Variant Database 2 Monitoring procedures (Part I, line 2) We require that the principal investigator submit to the CACNA1A foundation mid-year and final written reports regarding the project and the use of the grant proceeds in accordance with the foundations policy statement on research support. 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. Explanation of other changes in net assets or fund balances Part XI line 9 The prior year IRS Form 990 was prepared on the cash basis. The 2021 reviewed financial statements were prepared on the accrual basis which resulted in a $400,000 accrual of a pledge receivable. The $400,000 adjustment to net is required based on the cash to accrual conversion. List of other fees for services expenses Part IX line 11g Communications $18,320Science $48,413Translation $315 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.