Tracy Antonelli is a graduate of Simmons College and the Boston University School of Public Health. Tracy was a clinical researcher at New England Research Institutes and Boston Children’s Hospital. She contributed to numerous groundbreaking studies, including the Stroke Prevention Trial in Sickle Cell Anemia. Tracy’s work has been published in The New England Journal of Medicine. Tracy became a stay at home Mom in 2012, when she and husband Patrick Mooty adopted their first daughter (Emmie) from China. They have since adopted daughters Rosie and Frannie from China. Tracy, Emmie, Rosie and Frannie have transfusion-dependent thalassemia. All of them need blood transfusions every 3 weeks and daily chelation therapy. Tracy is a Board Member for the Cooley’s Anemia Foundation and a frequent patient speaker for Harvard Medical School. She advocates for blood donation and volunteers for Boston Children’s Hospital. Emmie, Rosie and Frannie are Children’s Miracle Network Hospitals Champions for 2022. While living with a chronic blood disorder is a big part of their lives, they are an active and fun-loving family, thriving with thalassemia.

In the role of CEO, Joe will manage MassBio’s federal affairs, state and municipal government relations, and will take the lead on initiatives to sustain Massachusetts’ economic competitiveness focusing on issues around infrastructure, workforce, and digital health. Prior to joining MassBio in September 2021, Joe served as the State Senator for the First Suffolk and Middlesex districts, representing his hometown of Winthrop; the Boston communities of East Boston, North End, Chinatown, Beacon Hill, Bay Village, and South End; the Cambridge neighborhoods of Cambridgeport, Riverside and MIT; and the City of Revere. While in the State Senate, Joe was the Chair of the Joint Committee on Transportation, Chair of the Senate’s Committee on Personnel and Administration, Chair of the Joint Committee on Housing, Vice Chair of Rules, and member of the Senate Ways and Means Committee, Senate Ethics Committee, Committee on Bonding, Capital Expenditures and State Assets, and the Committee on Financial Services. Before being elected to the state legislature in 2016, Joe practiced law specializing in criminal law in his private practice and as a public defender with Suffolk Lawyers for Justice. Since his early life, Boncore has been an active member in the Order Sons of Italy in America, he is currently the National Second Vice President. Boncore earned his bachelor’s degree in political science and government from Providence College in 2004 and received his juris doctorate from the Massachusetts School of Law. Joe resides in Winthrop with his wife Christine and twin sons John and Philip.

Tim and his wife, Maiya Dos, are raising their boys, Cooper (14) and Bode (11) in Ipswich, Ma. Their rare disease journey began in 2011 when their son Bode was diagnosed with Angelman Syndrome They first discovered the value of the Angelman Syndrome Foundation by attending a family conference in 2011, and have been engaged ever since. They are passionate fundraisers and enjoy welcoming and networking with Angelman and other rare disease families. Tim served on the ASF board of directors for 8 years, holding the positions of Secretary, Vice President, and ABOM representative during his tenure. He currently co-chairs the foundation’s parent advisory committee. Tim works in sales for AstraZeneca Pharmaceuticals and in his free time enjoys adaptive pursuits in the mountains and beach, skiing, hiking and surfing with his family.

Tony Frangie is Vice President and Head of Takeda’s US Lysosomal Storage Disorder & Endocrinology Franchise, which is part of the Company’s US Rare Disease Business Unit. He joined the Company (then Shire) in 2016 as Chief of Staff to the CEO, working on global initiatives across the business. He then moved into US Hematology leading Payer & Channel Strategy, prior to Takeda’s acquisition of Shire. Previously, he worked at McKinsey & Co, where he supported Shire’s R&D organization and the integrations of Dyax and Baxalta. Prior to that, Tony built his commercial experience through various roles at Hologic, OmniGuide, Genzyme, and Akzo Nobel. Tony holds an A.B. in Cell Biology from Colby College and an M.B.A. from Harvard Business School. He lives just outside of Boston with his wife, Mindy, and three children, Grace, Olivia, and Ryan.

Dr. Oxana Iliach has more than 15 years of experience in the healthcare industry including the last 10+ years in regulatory affairs. ​She has expertise in developing and executing regulatory strategies for drugs for rare diseases, pediatrics, and biosimilars, with a focus on Chemistry, Manufacturing and Control (CMC). Oxana’s specialty is biologics and cell and gene therapy products. Oxana has experience with the FDA, EMA, Health Canada, and other smaller agencies. ​She has a MSc in Chemistry and PhD in Pharmaceutical Science. ​Oxana Iliach is a member of Canadian Organization for Rare Disorders (CORD).

Carissa Juarez was born and raised in Boston, Massachusetts. Prior to making the decision to stay home with her daughter Jalyssa, who is 8yrs old and has sickle cell disease, Carissa was employed at the Department of Transitional Assistance as a Social Worker. Carissa decided to leave her position due to Jalyssa’s frequent hospitalizations and to better care for her daughter. Throughout the years, she was faced with many questions from the school and others about Jalyssa’s health, such as, what is SCD? Why does your daughter look so good and doesn’t look sick? Or why isn’t she crying if she is in so much pain? After hearing these questions and comments she decided to learn more about SCD.

Valarie Molyneaux is the Founder and Chief Executive Officer of VITFriends, a Vitiligo support community of friends. Valarie founded VITFriends after her own diagnosis and finding no local support group. She is responsible for the overall executive management of VITFriends, including outreach, chapter development, brand development, strategic planning, fundraising, board development, program oversight and the organizational/team management. Some of Valarie’s other accomplishments include Sister-2-Sister Prayer’s Support Group Director, Blue Hills Bank’s Hometown Hero Award recipient, 2016 Inaugural US Capitol Steps Vitiligo Rally organizer, 2018 Flag flown over the U.S. Capitol recipient, Global Vitiligo Foundation committee member, and L’Oréal Paris/NY 2020 Woman of Worth candidate. A former bank officer, Valarie currently works in education and is a personal life coach. She holds a B.A. from the University of Massachusetts in Human Service and Early Childhood Education.

Award winning former Boston TV news and business anchor Mike Nikitas led live coverage of countless major news events, including the Boston Marathon bombings, 9/11, and New Hampshire Presidential Primaries. He interviewed hundreds of major newsmakers and business leaders, and hosted numerous fundraisers, debates and conferences. Known for clarity and credibility, he brings these characteristics to the core of his work with clients. Nikitas is an adjunct professor of “Media Strategy and Skills,” teaching graduate students at the Carsey School of Public Policy at the University of New Hampshire, Durham. He has guest-lectured at Harvard, Northeastern and Boston University. He has a special interest in veteran’s issues and is the longtime emcee of the annual Massachusetts Veteran’s Day Ceremony. Nikitas appeared as a newscaster in two movies, including the hit film “Ted.” Nikitas is a five-time Emmy nominee as Outstanding Anchor in Boston, and has been inducted into the prestigious “Silver Circle” of the National Academy of Television Arts and Sciences.

Linda Stevens is an Associate Director of Patient Engagement Equity and Transparency at Biogen. Linda has 25 years of experience in clinical research. She has worked in across a variety of therapeutic areas in pharma and biotech. At Biogen, Linda leads the neuromuscular disease unit and is passionate about incorporating the voice of the patient into clinical trials.

Tamar Thompson is a government affairs and health policy strategist with more than 20 years of leadership experience. Tamar also has extensive market access experience; over the course of her career she has worked with governmental agencies, private payers, Congressional leaders, and patient advocacy groups to ensure optimal patient access to existing and new medical therapies, including rare disease. Prior to joining Alexion, Tamar lead Federal Exeuctive Branch Strategy and State Government Affairs for Bristol-Myers Squibb Company, Mrs. Thompson served a strategic policy advisor and consultant for three premiere Washington DC based firms, ADVI, Kimbell & Associates and Avalere Health, where she managed a diverse portfolio of clients, including medical device, biotech, pharmaceutical, and specialty drug, companies. Preceding her time in Washington DC, Ms. Thompson was Director of Health Policy & Reimbursement at Molecular Insight Pharmaceuticals (MIP) where she was charged with developing and launching reimbursement strategy for cutting-edge molecular diagnostic and therapeutic treatments options. She has also held health policy and reimbursement leadership strategy roles at GE Healthcare and Bracco Diagnostics. Tamar has also served as claims operations director and benefit plan manager in the managed care sector for Humana and ValueOptions. Tamar also serves on the board of directors for MassBio, Healthy Women, and the University of Richmond Customer Experience Advisory Board. Tamar holds a M.S. in Health Sciences with a concentration in Public Health from Trident University in Cypress California. She also has an Executive Leadership certificate from Columbia University and maintains active certifications from the American Health Information Management Association (AHIMA) as a Certified Coding Specialist (CCS) and Certified Coding Specialist – Physician Based (CCS-P).

Kate Tighe is Vice President and Head of US Public Affairs and Patient Advocacy for Rare Diseases at Sanofi. In this role she helps bridge the company with the rare disease community with the goals of sharing insights to help move patient-centered drug development forward and ensuring affordable, sustainable access to innovation for all members of the healthcare ecosystem. She was previously a member of Sanofi’s Global Patient Advocacy team and was privileged to meet and hear from advocates across the world. Prior to joining Sanofi, Kate built the patient advocacy function for Idera Pharmaceuticals and before that spent 7 years as an Executive Director with the Muscular Dystrophy Association in Massachusetts.