Angioma Alliance is the Patient Advocacy Group for and by those affected by Cerebral Cavernous Malformations (CCM) - a vascular disorder with unknown disease etiology and no available pharmacological treatment. Our mission is two-fold: to support and educate the patient community and to drive research for a cure. CCM is a brain disease typified by development of vascular lesions that are multi- cavernous, thin-walled structures with inadequate tight junctions and a propensity for hemorrhage. Lesion hemorrhage can result in a variety of clinical symptoms including, most severely, hemorrhagic stroke and/or death. While the biological mechanisms for lesion development and progression continue to be elucidated and no pharmacological treatment is yet available for the patient community. The only treatment remains surgical removal of the lesion;however, a surgical option may not be suitable for all patients, particularly those with multiple and/or deep brain lesions. Facilitating research for the advancement and rapid development of a pharmacological treatment for CCM is the prime motivation for the efforts of the CCM patient community. In order to facilitate novel and collaborative research, Angioma Alliance is committed to hosting the annual CCM Scientific Meeting. This meeting brings together stakeholders from research, advocacy, and government agencies to share and discuss unpublished research in an effort to drive innovation and generate unique and multidisciplinary hypotheses. No other meeting in the world draws together the same cohort of investigators - last year's meeting included surgeons and physicians, geneticists and microbiologists, as well as animal research teams focusing on murine, zebrafish, C. elegans and Drosophila models. The strength of this meeting, and the reason attendees commit to annual attendance, is the opportunity for interactive discussions, data sharing, hypothesis generation, and collaboration. Importantly, the meeting organizers insist on the presentation of unpublished work;therefore, the CCM Scientific Meeting is often the site for first public presentation of important findings that are critical for advancing the field. The primary objective of this proposal is to host the 10th anniversary CCM Scientific Meeting. The nine-year history for this meeting series is one of success and progress in the field of CCM research, much of which can be attributed to the new collaborations initiated at the meeting series. The inaugural CCM meeting was held as an informal single-day workshop for investigators to meet face-to-face and discuss their unpublished data - the agenda was flexible and the discussions were lively. This small workshop has grown to become the premier international scientific conference for those studying any and all aspects of CCM research. The primary objectives of the 2014 CCM Scientific Meeting are: 1. To expand and continue to build upon past meeting success by focusing on new research findings from diverse investigators and facilitating interdisciplinary interactions between investigators who otherwise would not have the opportunity to meet face-to-face;and 2. To translate basic and preclinical findings to develop an inclusive, collaborative and global action plan for clinical trial efforts using a moderated exper panel discussion;and 3. To provide educational and training opportunity for junior investigators.

Public Health Relevance

Cerebral cavernous malformations (CCM) is a devastating blood vessel disease of the brain and spinal cord that causes affected patients to suffer a variety of symptoms including headaches, focal neurological deficits, seizures and/or hemorrhagic stroke. While the biological mechanisms of this illness are beginning to be understood, the only treatment option is brain surgery. The annual CCM Scientific Meeting aims to assemble all stakeholders to share and discuss the latest research data, initiate novel and multidisciplinary collaborations and to drive research for a cure and development of a non-invasive drug treatment.

National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS)
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National Institute of Neurological Disorders and Stroke Initial Review Group (NSD)
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Koenig, James I
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Angioma Alliance
United States
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