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.
Chief Development Officer
As Chief Development Officer for Cure Rare Disease Bill is leading development efforts of an organization that is substantial and impactful. Throughout his career, Bill has had the opportunity to work with individuals impacted by rare disease while helping businesses grow, including non-profits. Bill’s core strengths revolve around developing relationships, managing a diverse portfolio, and delivering financial results. All the roles have required an entrepreneurial spirit, relationship building skills, and business fortitude. With the Muscular Dystrophy Association he managed fundraising operations and successfully exceeded goals each year. He was responsible for board/committee recruitment, partnership development, and community organizing. At the Jewish Community Center (Newton, MA) he created a winning team culture. At Boston Sports Club (Wellesley, MA) managed a large business that grew income from $8.5M to $10M and participated in the Board of Wellesley Chamber of Commerce. At Wellbridge, a medically-supervised fitness chain, he was a leader in a developing a successful business and brand. At Virgin HealthMiles he helped bring the Health Rewards business to the US from South Africa. Additionally, he was Vice President & Program Chair for New England Health, Racquet and Sports Association. He is well-versed in scientific developments having graduated from science programs at UMass-Boston (BS) and Northeastern University (MS).
Director of Community Engagement
Jenny comes to CRD full of passion and drive. With two close friends having a form of muscular dystrophy, rare disease research strikes home for her. Her extensive background in grant writing and fundraising, has prepared her well to reach new fundraising milestones for CRD. Fostering relationships and spreading awareness to build a mutual passion is one of her strengths. Having raised funds for 43 types of muscular dystrophy, she has a keen sense of the critical impact of funding research. Jenny is incredibly eager and feels very fortunate to be able to support the development of cures for those impacted by rare diseases.