Connie Lee, Psy.D. – President and CEO
Connie Lee is the founding President of Angioma Alliance. Connie is a licensed clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Connie’s personal story with cavernous angioma began in January 2000. At that time, Connie’s 4-month-old daughter Julia received brain surgery for a major hemorrhage and hydrocephalus caused by a cavernous angioma. Since then, Julia has had three additional cavernous angioma surgeries and a T2-L3 spinal fusion to correct scoliosis which is believed to be associated with Julia’s CCM3 mutation. Dr. Lee founded Angioma Alliance in 2002. She has guided the organization from its beginnings as a support group to its current role as the driving force for research, legislation, and patient care.
Science and Research
Amy Akers, Ph.D. – Chief Scientific Officer
Prior to joining Angioma Alliance as Chief Scientific Officer in 2009, Amy began her cavernous angioma research career at Duke University. At Duke, she worked in the lab of distinguished geneticist and long-time Scientific Advisory Board member, Doug Marchuk, Ph.D. 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 Ph.D. from Duke’s University Program in Genetics & Genomics, Amy completed her undergraduate studies at Cornell University where she graduated Cum Laude with a degree in biological sciences.
Adrienne Sheline, MPH – Clinical Research Specialist
Adrienne Sheline is the Angioma Alliance team member who can respond to the request, “Tell us about your members” using data and who can assist researchers and industry in bringing this information to bear toward their work for better treatments. Adrienne is part of the Angioma Alliance research recruiting team, working to engage members as informed research participants and promoting research participation opportunities. Adrienne holds a master’s degree in public health with a focus on health promotion and education, as well as many years of clinical research experience in pediatric neurosurgery. She has a great interest and passion for neurological research and loves working with both patients and their families. You can reach Adrienne at firstname.lastname@example.org.
Community Engagement and Fundraising
Darla Clayton, Psy.D. – Community Engagement and Fundraising Specialist – East
Darla is a clinical psychologist and the head coach and “chief cook and bottle washer” for an adaptive track and field team she founded 8 years ago. She serves on the board for Adaptive Track and Field USA and for Dralla. Darla and her two children have been diagnosed with a mutation of the CCM2 gene. She has been a member of Angioma Alliance since 2005 and has volunteered as a Peer Support Mentor for Angioma Alliance, supporting families of newly diagnosed children. You can reach Darla at email@example.com.
Lindsay Ramirez – Community Engagement and Fundraising Specialist – West
Lindsay has been involved with Angioma Alliance the past three years as Co-Chair of the Orange County walk and founding Chair of the Southern California Community Alliance. Previously, she was a certified athletic trainer with 12 years of health and medical experience, as well as an educator of sports medicine and advisor for the Sports Medicine Program. Lindsay has an affected husband and son. You can reach Lindsay at firstname.lastname@example.org.
New Mexico – Baca Family Historical Project
Nora Chavez – Community Outreach Specialist
Nora Chavez joined Angioma Alliance as the Community Engagement Specialist for the New Mexico area. Her focus is on developing and implementing the Baca Family Historical Project with the goal of identifying descendants of Cristobal Baca, one of New Mexico’s first settlers during the 1600s.
She will be working closely with Joyce Gonzales, New Mexico Genealogist to identify at-risk families and develop rural/regional family support groups. Additionally, the program trains Community Health Workers and other medical professionals to allow them to provide informed care to the many patients in New Mexico.
Nora’s background in community engagement comes from her work with Save The Children Federation, New Mexico Community Foundation and more recently with UNM’s New Mexico Cares Health Disparities Center.
Nora received her BBA from American Intercontinental University with a major in business administration and global marketing. She is also costumer and artist having received her training at the Fashion Institute of Design & Merchandising.
Joyce Gonzales – Genealogist
Joyce has been involved with Angioma Alliance for many years as a volunteer, spearheading our efforts in New Mexico, where a founder mutation among the original Hispanic population has resulted in the largest population of families affected by cavernous angioma in the world. In 2017, Joyce joined us as a part-time genealogist, working to complete the family tree that she discovered started with Cristobal Baca II and Anna Moreno de Lara in the 1600s.
Together with our Community Engagement Specialist, Joyce is part of a team improving visibility and support for our families in New Mexico. Our hope is that every family in New Mexico will receive informed care and will work together for a cure.