Chief Scientific Officer


Amy L. Akers, PhD

Amy Akers, PhD, joined Angioma Alliance as Chief Scientific Officer in 2009.

Major Responsibilities

As Chief Scientific Officer Amy is charged with the task of facilitating CCM research for a cure. Completing this objective involves a wide variety of projects including:

Research Support, Recruitment & Patient Registry Management – Amy serves as the Angioma Alliance research liaison to all research groups in an unbiased way to support and recruit for current studies. In an effort to expedite study recruitment, Angioma Alliance launched the International Cavernous Angioma Patient Registry in 2010. This online communication tool is designed to identify and communicate with individuals who are interested in research participation. Amy was primarily responsible for developing the registry questionnaire and continues to serve as the registry coordinator

CCM DNA & Tissue Bank – The Angioma Alliance DNA & Tissue Bank aims to facilitate research by providing investigators with biological samples and clinical data sets. Amy is the principal investigator of this study. She is responsible for recruitment and enrollment, as well as advertisement and dispersal of materials to the research community.

CCM Scientific Meeting – Amy is responsible for coordinating Angioma Alliance’s annual CCM Scientific Meeting. This conference is a venue for all stakeholders (researchers, clinicians, advocates, industry and government agencies) to assemble and for international researchers and clinicians to share latest CCM research data. It is the goal of Angioma Alliance to continue to host this annual series in an effort to facilitate scientific progress and drive research for a cure.

Communication Liaison – Communicating with the scientific and patient communities, the pharmaceutical industry as well as government regulatory and funding agencies is a priority for Angioma Alliance. Amy offers patient education through personal communications, presentations at family meetings, social media, newsletters and peer-reviewed publications. Amy is also charged with the task of interfacing with the National Institutes of Health’s program management to encourage continued prioritization and funding of cavernous angioma research and with representatives from the pharmaceutical industry in an effort to initiate public-private partnerships that may lead to expedited drug development.

Additional Current Projects

Genetic Testing Initiative – In 2015 Angioma Alliance will be launching a Genetic Testing Initiative to help families with the genetic form of CCM fundraise for and obtain clinical genetic testing. Amy has been involved with this project at many levels.

Clinical Care Guidelines & Clinical Centers of Excellence – Amy is currently working with Angioma Alliance’s Scientific Advisory Board to develop a publication on CCM Care and Consensus Clinical Guidelines. This document will be important for the patient and medical communities as well as for guiding the development of clinical centers at major research universities.

Brain Vascular Malformations Consortium (BVMC) – The BVMC study project has recently been awarded another 5 years of funding from the National Institutes of Health. These rare disease consortiums are unique funding mechanisms, as they require patient advocate groups to participate as research partners. Amy serves as the patient representative for the CCM project and has worked to include Angioma Alliance as a recruitment site for this new round of funding. More details to come in the future…

Previous Research Experience

Amy began her cavernous angioma research career at Duke University where she worked in the lab of distinguished geneticist and long-time Scientific Advisory Board member, Doug Marchuk, PhD. While in Dr. Marchuk’s lab, Amy focused on developing mouse models for cavernous angioma and on investigating the molecular nature of human brain lesion development. Her genetic studies succeeded in providing evidence that two genetic ‘hits’ are necessary for the genesis of familial cavernous angioma lesions. Prior to receiving her PhD from Duke’s University Program in Genetics & Genomics, Amy completed her undergraduate studies at Cornell University where she graduated Cum Laudewith a degree in biological sciences.

Amy’s achievements include: 

  • Received grant funding from the National Institute of Neurological Disorders and Stroke to support the 2010 Pathobiology of CCM Scientific Workshop and 2012 & 2014 CCM Scientific Meetings
  • Worked with Senator Tom Udall’s office and Dr. Leslie Morrison at the University of New Mexico to introduce appropriations legislation to establish a ‘Cavernous Angioma Clinical Care, Advocacy, Research and Education center’
  • Co-Authored eight peer-reviewed journal articles including studies on human genetics, the CCM3 syndrome, and an article on cavernous angioma for the National Library of Medicine’sGeneReviews
  • Serves as Angioma Alliance’s liaison for the Brain Vascular Malformations Research Consortium
  • Serves as liaison for early stage clinical trial planning to engage and facilitate all stakeholders
  • Received a 2013 DIA Patient Fellowship Program Scholarship and is currently working to earn a DIA Diploma in Clinical Trial Management through Hibernia College.

The search for a cure of cavernous angioma is a large part of Angioma Alliance’s organizational mission, and is the driving force behind the creation of the Chief Scientific Officer position, which Amy is the first to fill.  As Chief Scientific Officer, Amy is committed to facilitating cavernous angioma research by efficiently and effectively leveraging the resources of Angioma Alliance to drive research for a cure.