2025-07-02T10:31:53-04:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 844985747 CACNA1A Foundation % Sunitha Malepati CACN 2039696552 31 Point Road Norwalk CT 06854 SUNITHA MALEPATI Vice President & Treasurer 2039696552 2025-06-27 true true JOHN MULLINS P01429307 2027706371 2025-07-02 2024 2025-03-06 01:10:19Z Sunitha Malepati 31 Point Road Norwalk CT 06854 465614 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) 8 8 0 18 0 0 385860 413016 15000 8897 28701 385860 465614 174996 91155 0 0 0 78327 278707 449002 453703 540157 -67843 -74543 863328 726400 178195 115810 685133 610590 X To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission) false false 247475 91155 In 2024, the CACNA1A Foundation launched a 10-year Clinical Assessments Research Study to establish baseline measurements for clinical trials and advance treatment development. We funded multiple research projects, including novel gene therapy strategies, small molecule screening, and antibody validation, while also expanding our Research Network with new working groups. Additionally, our team published a key paper outlining a pathway to clinical trials for CACNA1A-related epilepsies. 159643 15000 On July 18, 2024, the CACNA1A Foundation hosted its third annual Research Roundtable, bringing together 50 researchers, clinicians, industry representatives, and NINDS grant managers to advance clinical trials for CACNA1A-related disorders. We also held our second hybrid Creating Connections Community Conference, uniting over 200 participants, including families and experts, to share research updates and support. This event remains a vital space for connection, education, and empowerment in the rare disease community. 34603 The CACNA1A Foundation raised awareness by participating in national and international events, including Global Genes, the American Epilepsy Society, and Rare Disease Day at the Broad Institute. We hosted 22 virtual meetups for families and launched the Cure Club to boost research participation through personalized outreach. Additionally, we advocated for a unique ICD-10 code for CACNA1A-related neurodevelopmental disorders at the ICD-10 Coordination and Maintenance Committee Meeting. 441721 true true 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 true false false false false false false false false false false false false false false false false false false false true 9 0 true 0 false false false false false false false false false false false false X 8 8 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 Allison Buchner Director 5.00 0.00 X 0 0 0 Hala Mirza Director 2.00 0.00 X 0 0 0 Sarah Greathouse Director 5.00 0.00 X 0 0 0 Deborah Ondrasik MD Director 5.00 0.00 X 0 0 0 Michael Strupp Director 5.00 0.00 X 0 0 0 Lisa Manaster President 40.00 0.00 X X 0 0 0 Sunitha Malepati Vice President & Treasurer 40.00 0.00 X X 0 0 0 Amy Junge Secretary 10.00 0.00 X X 0 0 0 0 0 0 0 false false false 413016 413016 Sponsorships 900099 15000 15000 15000 8897 8897 0 Other Revenue 900099 28701 28701 28701 465614 43701 0 8897 X 82885 82885 8270 8270 9801 6533 458 2810 8400 5598 393 2409 168667 112422 7882 48363 10816 3562 7254 15202 1316 1689 12197 21114 10577 5947 4590 5080 4005 371 704 166297 166297 3294 3294 Miscellaneous 40331 40256 75 540157 441721 20109 78327 842640 711278 20688 15122 863328 726400 25695 3859 152500 111951 178195 115810 X 512627 610590 172506 685133 610590 863328 726400 -74543 0 X true X false true false X 192925 484663 343299 385860 413016 1819763 192925 484663 343299 385860 413016 1819763 430024 1389739 8897 8897 28701 28701 1857361 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED East Asia and the Pacific Research 8270 1 false false false false false false true Trustees of the University of Penn 2929 Walnut St Ste 300 Philadelphia PA 19104 231352685 501c3 16750 Research University of Maryland School of Me 3112 Lee Building 7809 Regents Dr College Park MD 20742 526002033 501c3 5000 Research The Broad Institute 415 Main Street Cambridge Cambridge MA 021421401 263428781 501c3 50000 Research 3 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: $16,470Science: $107,018Community: $100Fundraising: $43,564Translation: $1,515 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. 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.