Alan H. Beggs, PhD
Alan H. Beggs PhD. joins Cure Rare Disease as our Scientific Director and is excited about the mission of developing customized therapeutics. Alan is also the Director of the Manton Center for Orphan Disease Research at Boston Children’s Hospital and Sir Edwin & Lady Manton Professor of Pediatrics at Harvard Medical School. Following undergraduate studies at Cornell University, Dr. Beggs obtained his PhD in Human Genetics at Johns Hopkins, with subsequent postdoctoral fellowship training in medical and molecular genetics at Johns Hopkins and Boston Children’s hospitals. Throughout his career, he has used the toolset of human molecular genetics to study normal biology and disease processes in a variety of diseases with a particular focus on congenital myopathies, muscular dystrophies, and related neuromuscular diseases. In this role, and as founding director of The Manton Center, he has led the discovery of numerous new disease genes and has pioneered the development of gene therapy for one such condition, myotubular myopathy. The Manton Center provides resources and a training environment to support research on understudied “orphan diseases” through support of junior faculty with multiyear career development awards, pilot project grants, and access to the Center’s Gene Discovery Core (GDC), which provides genetic and genomic analysis services, and a rich collaborative environment for interactions between clinicians, researchers and bioinformaticians. Dr. Beggs has been a standing and ad hoc member of numerous National Institutes of Health grant committees and reviewer for the Muscular Dystrophy Association, March of Dimes and other national and international medical research foundations. He is a member of multiple scientific advisory boards, and boards of directors for both nonprofit and commercial entities.
Kirsten Parisi has devoted her 20-year career to serving as a social worker in the disabilities community, helping people with physical and mental disabilities cope with the challenges of their daily lives. She didn’t realize how her professional life in the disabilities community would foreshadow her personal life until 2013, when her two young sons were diagnosed with Duchenne muscular dystrophy, and she was identified as a carrier. Since then, she has worked tirelessly to heighten awareness and understanding of Duchenne muscular dystrophy. At Cure Rare Disease, Kirsten is dedicated to strengthening relationships within the rare disease community to foster collaboration and research strategies for curing genetic disorders. She holds a Bachelors from Northeastern University, and a Masters from Assumption College in Rehabilitation Counseling.
Director of Social Media, Digital Marketing
Rachel Duncan is the director of social media and digital marketing for Cure Rare Disease. Rachel graduated magna cum laude from the College of Communication at Boston University. She handles all of our social media as well as all Cure Rare Disease marketing materials and graphic design. Rachel joined the CRD team in May and says she has been consistently inspired by the incredible work it does every day. She’s both honored and proud to be part of something so special to her. Say hi to Rachel by DMing Cure Rare Disease on any of our social media accounts!