Financials
The Angioma Alliance (d/b/a Alliance to Cure Cavernous Malformation) fiscal year runs from October 1st through September 30th.
Fiscal Year 2024 Audited Financial Statement
Fiscal Year 2024 IRS 990 Filing
Funding Priorities
1. Cavernous malformation research
Funding research for better CCM treatments and a cure is our top priority. Critical research projects include:
CCM CureDriver™ Lab. Our CCM CureDriver Lab is fast-tracking CCM drug development. We launched this ambitious project in 2024 to test the dozens of potential CCM treatments that were not being tested in traditional academic and pharmaceutical labs. With our CureDriver Lab, we can test drugs quickly and affordably, by drug-development standards, and get them to clinical trials and patients faster. Our CureDriver Lab also offers an opportunity for industry and academic partners who are developing CCM drugs to test them easily. The estimated cost for screening dozens of drugs and testing the three top candidates in our model: $400,000.
Cavernous Malformation Patient Registry. We established and house the largest CCM patient registry in the world, offering data to researchers everywhere. As of this writing, 3000 patients and caregivers have enrolled and volunteered data to advance CCM research, including clinical drug trials. Our Patient Registry speeds up the timeline to better treatments and a cure. For example, patient recruitment enabled by the registry led to an ahead-of-schedule enrollment of Recursion’s successful REC-994 SYCAMORE Trial. Estimated annual cost: $100,000.
International CCM Scientific Meeting. Our annual international CCM scientific meeting is the most important event each year for CCM research progress. It is the only time our group of scientists from 5 continents meets face-to-face to share their unpublished research. This is the conference where they form new collaborations and map out a path to treatments. Several multi-institution research consortia use the opportunity to hold satellite meetings the day before the official start of our meeting. Every CCM scientific advance made in the last 20 years can attribute at least part, if not all, of its origin to our meeting. Building and maintaining our strong community of researchers requires personal interactions that can only be achieved face-to-face. Estimated annual cost: $60,000.
CCM DNA and Tissue Bank. Our “biobank” of CCM tissue and DNA samples, donated after surgery, is a resource used by researchers around the world. The DNA and Tissue Bank also contains plasma, serum, and urine samples, which have become important in developing blood biomarkers. Patients may enroll in the biobank after joining the CCM Patient Registry. Estimated annual cost: $35,000.
2. Improving CCM clinical care and patient support
We started out in 2002 as a patient support group, and patients and their families continue to be our North Star. The critical projects below connect CCM patients and families to excellent CCM care, information, and support.
CCM Centers of Excellence and Clinical Centers. In 2016, we created the first accreditation system for recognizing U.S. hospitals — including children’s hospitals — that provide excellent, multi-disciplinary cavernous malformation care. Hospitals must apply for this recognition. These CCM Centers of Excellence and Clinical Centers provide informed, coordinated care that follows our peer-reviewed Clinical Care Consensus Guidelines. In addition, Centers of Excellence conduct CCM research, often as clinical trial sites. We are expanding the CCM Center network and developing continuing medical education (CME) materials to educate primary care doctors, pediatricians, and other specialists inside and outside of the network. Estimated annual cost: $140,000.
Free CCM genetic testing. Alliance to Cure Cavernous Malformation offers free genetic testing to any U.S. or Canadian resident who cannot obtain insurance coverage for testing and has multiple cavernous malformations without an alternate explanation. Patients, clinicians, and researchers consider this one of our most important services because it helps with clinical decision-making and it prepares these patients to participate in research. Alliance to Cure Cavernous Malformation employs a licensed professional to order testing, and the test results are transmitted to the patient’s physician. Estimated annual cost: $45,000.
CCM Patient Navigation. Our patient navigation program connects our U.S.-based patients and caregivers to resources beyond their initial CCM medical care. Surveys of our families indicate their primary needs are connections to second opinions, aftercare, and clinical trials. We offer individualized consultations with warm handoffs to Centers and other resources. We have also added a natural language chatbot to our website to allow members to obtain information more easily. Estimated annual cost: $75,000.
Please join us in driving a cure and improving lives for all affected by cavernous malformation (CCM). Donate here to support our work. Thank you!
Last Updated 3.13.2025
