Connie Lee is the founding President of the Alliance to Cure Cavernous Malformation. Connie is a licensed clinical psychologist and the mother of a daughter with multiple cavernous malformations. Connie’s personal story with cavernous malformation 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 malformation. Dr. Lee founded Angioma Alliance, the original name of the Alliance to Cure, 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. You can reach Dr. Lee at clee@alliancetocure.org.
Science and Research
Amy Akers, Ph.D. – Chief Scientific Officer
Before joining Alliance to Cure Cavernous Malformation as Chief Scientific Officer in 2009, Amy Akers began her cavernous malformation 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, Dr. Akers focused on developing mouse models for cavernous malformation and 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 malformation lesions. Dr. Akers is our primary liaison with the basic science community and a frequent co-author of CCM-related scientific papers. You can reach Dr. Akers at amy.akers@alliancetocure.org.
Jianbo Hu, Ph.D. – Industry Relations Director
Before joining Alliance to Cure Cavernous Malformation as Industry Relations Director and the head of our Cure Acceleration Initiative in 2021, Jianbo Hu, Ph.D., served as Thomas Jefferson University’s Associate Director of Technology Licensing. He holds over twelve years of experience in technology development, translation, and commercialization. He was previously a senior technology licensing officer at Penn State University, where he independently managed all aspects of the College of Medicine’s technology transfer needs. He obtained his Ph.D. in Physiology from Washington State University. You can reach Dr. Hu at jianbo.hu@alliancetocure.org.
Holly Blei – Clinical Research Specialist
Holly Blei is the Alliance to Cure Cavernous Malformation team member who can respond to the request, “Tell us about your members,” using data and assist researchers and industry in bringing this information to bear toward their work for better treatments. Holly is part of the Alliance to Cure Cavernous Malformation research recruiting team, working to engage members as informed research participants and promoting research participation opportunities. Holly earned her B.S. in Biology, and her career background includes training marine mammals, promoting conservation education, and teaching preschool children. She spent the last five years conducting pediatric research at Nationwide Children’s Hospital. She loves working with patients and their families and has a great passion for doing work that ensures all families achieve the best outcomes. You can reach Holly at hblei@alliancetocure.org.
Community Engagement and Fundraising
Jessica Biggs, MPH – Health Equity Program Development and Outreach Specialist
Jessica Biggs joined Alliance to Cure Cavernous Malformation as the Health Equity Program Development and Outreach Specialist. In this position, Jessica leads equity, diversity, & inclusion efforts both in our targeted outreach programs and in our organization, including the grant-funded Breaking Barriers Initiative.
Jessica has a background in the community health and promotion field, working to improve socioeconomic and racial disparities within her local community, and has worked for local school nutrition programs and county organizations. Jessica holds a Master of Public Health degree. You can reach Jessica at jessica.biggs@alliancetocure.org.
Dinah Winchester, MA – Director of Strategic Partnerships
Dinah became involved with Alliance to Cure in 2020 when her one-year-old daughter was diagnosed with multiple cavernous malformations after suffering a stroke and undergoing a successful emergency brain surgery. Dinah now works directly with Alliance to Cure’s strategic partners – individual major donors, foundations, and government entities – whose support brings a cure within reach. She is also responsible for the organization’s branding and strategic communications. Before joining Alliance to Cure, Dinah was a public high school English teacher in California and a communications and advocacy professional at Save the Children in Washington D.C. She has a bachelor’s degree from Northwestern University and a master’s degree from Stanford University. You can reach Dinah at dwinchester@alliancetocure.org.
Lindsay Ramirez, MA – National Community Development Director
In Lindsay’s role as Community Development Director, she oversees patient educational programs, patient support, and fundraising. Before joining Alliance to Cure Cavernous Malformation as a staff member, Lindsay was involved with Alliance to Cure Cavernous Malformation as the volunteer Co-Chair of the Orange County walk and founding Chair of the Southern California Community Alliance. Lindsay has an affected husband and son. You can reach Lindsay at lindsay@alliancetocure.org.
Darla Clayton, Psy.D. – National Community Relations Specialist
In Darla’s National Community Relations Specialist role, she is responsible for the patient support and education programs offered by Alliance to Cure Cavernous Malformation. In addition to her work with us, Darla is a clinical psychologist. Darla and her two children have been diagnosed with a mutation of the CCM2 gene, and she has been a member since 2005. You can reach Darla at darla@alliancetocure.org.
Linda Fuchser – National Community Development Specialist
Linda has been a member since her diagnosis of CCM1 in 2004. Linda’s grandmother and mother share the illness. Before becoming a staff member, Linda participated in The University of New Mexico clinical study of the CCM1 mutation. She has volunteered as the Event Co-Chair for the Southern California Community Alliance since 2019, holding annual walks in Kauai, Malibu, and Orange County. You can reach her at linda@alliancetocure.org
Updated 2.1.24
