Tara currently serves as Associate Chair of the North Carolina Rare Disease Advisory Council and Network. The council was created as a result of co-authoring legislation with a North Carolina patient advocate to create a Rare Disease Advisory Council signed into law, August 2015.
Tara has created a unique rare disease ecosystem within the state that brings together patients, caregivers, academics, clinicians, foundations, industry and any entity in rare disease. Tara is also the President and Founder of Rare Disease Innovations Institute, RDII. RDII is a global non-profit focused on educating, engaging and equipping the rare disease community to achieve a higher quality of life, accelerating diagnosis and enabling access and treatment.
Through this non-profit and her rare disease network, RDII has developed exclusive toolkits for other states to build upon the learning and success of North Carolina enabling creation of successful councils and unique rare disease networks. The toolkits are state tailored to the unique rare disease population. RDII also partners with rare disease advocacy groups, academia, foundations, healthcare systems, state and federal government and industry to build disease specific models to support targeted disease populations and the challenges to accessing care and managing their disease. These models are currently developed in North Carolina and can be modeled globally by the RDII team.
Becky has spent over thirty years working with individuals and organizations focused on medical crisis support. During the first half of her career, Becky served as a hospice chaplain. She then distilled what she learned from a wide variety of individuals making their way through shocking times into seven common elements of resilience.
Becky connected those fundamentals to stories, resources, and action steps, becoming a professional speaker to medical and business organizations. In 2015 she published After the Shock: Getting You Back on The Road to Resilience When Crisis Hits You Head On. Whether consulting with global organizations like Ronald McDonald House Charities® or voicing the stories of inspiring people, Becky shares compassionate, practical ways to care for self and others when life turns upside down. When she became the caregiver to both her 96-year-old mother and her 36-year-old daughter with a rare disease, Becky saw a need in the often-siloed world of medicine. Now as the developer and host of The Common Voice of Rare Disease, she provides a way for patients, families, caregivers, advocates, researchers, medical and pharmaceutical professionals, plus policy makers to share their wisdom on a central platform.
Parvathy Krishnan is Director of Patient Engagement for the Rare Disease Innovations Institute (RDII), formed to support the global rare disease community accessing resources and championing the patient voice to drive actionable change.
Parvathy is herself a Rare Disease Patient with lynch syndrome and in her star role, is a mother to two medically complex children with rare and ultrarare diseases. She is a Passionate patient advocate and storyteller of rare disease from patient and parent perspective. Navigational guide for rare disease community sharing learnings and connecting to resources based on personal journey. As a patient, patient advocate and medial-mom she works with state and national organizations that advance patient advocacy and clinical education.
Since becoming a rare disease champion upon the diagnosis of her children, Parvathy has assumed many leadership positions in the rare disease community including University of North Carolina Patient Family Advisory Board co-chair since 2018, elected to Chair in 2020. Parvathy is a sought after speaker and panelist on topics such as End of Life Care for Children, Patient Perspectives on rare and ultrarare disease, and Patient and Parent Perspective Living with a Rare and Ultra-Rare Disease. She has represented the patient and parent perspective for IQVIA and Syneos Health Rare Disease Day events and many other Pharmaceutical Sponsored events. Most recently Parvathy was also the keynote speaker for The Rare on the Road Event through Global Genes. Parvathy also puts her passion for patient advocacy into writing including her role as contributor for Featured articles.
With over 30 years of public and private legal practice Rufus Edmisten has the knowledge and professional expertise necessary to assist clients in any area and with any need.
This experience has provided him with the opportunity to develop an extensive network of business and government contacts, including strong ties with state, regional, national, and international leaders. His understanding and personal insight together with a keen familiarity with business and government interaction has proved invaluable to our clients in reducing bureaucratic red tape.
Rufus Edmisten was born and raised in Boone, North Carolina. He earned an undergraduate degree in political science at the University of North Carolina at Chapel Hill and a J.D. with honors from George Washington University in Washington, D.C. After 10-years of service on North Carolina Senator Sam Ervin’s staff that culminated with a position Deputy Chief Counsel to the Watergate Committee, he returned to North Carolina in 1974.
Rufus was elected the state’s Attorney General in 1974, an office he held until he won the Democratic nomination for governor in 1984. In 1988 he was elected to the office of Secretary of State. In 1996 he concluded over 30 years of public service and launched a governmental relations legal practice that has become Edmisten & Webb Law. His prior public service as Attorney General and Secretary of State allows him entry to higher level discussions in such organizations as the National Association of Attorneys General and the National Association of Secretaries of State.
Rufus is a regular panelist on North Carolina’s most popular television show on politics, NC SPIN. He is also a go-to legal commentator on Court TV whenever North Carolina court cases are in the national spotlight.
Rufus lives in Raleigh with his wife Linda. They share their lives with an assortment of dogs, cats, and horses, as well as family and friends.
As the CEO of Falcon Therapeutics, Susan Nichols is responsible for running all facets of the business. Susan has a proven executive management track record and over twenty years of corporate management and leadership experience in high growth biotech, entering the cell therapy arena in 2010.
Susan brings a unique perspective having served in global executive management roles with early stage , emerging, and fortune 500 companies such as Invetech, Bebies, Thermo Fisher/ASI and Hitachi Chemical, She developed and oversaw partnerships with pharmaceutical companies and life science companies to advance drug development and the manufacturing platforms that enable commercial success. Susan was able to shepherd scale-up efforts of cell therapies through all phases of clinical trials and into commercialization. In support of early stage Life Science companies, she successfully established funding relationships with VC’s, Private Investment Groups, Angel Investors, Philanthropic Alliances, Non-traditional Financing, Royalty Deals, Licensing Opportunities, and Strategic Alliances.
Throughout her career, she has successfully built market opportunities, product platforms, high performing teams, and pipelines. Susan joined Falcon Therapeutics, Inc. in January 2018 to apply her experience establishing new markets for cell therapies, fundraising for early stage life science companies, and establishing partnerships with pharmaceutical companies to support Falcon’s next steps toward regulatory approval and commercialization of its new promising Trilogy cell platform targeting solid tumor cancers. Susan serves on the Rare Disease Forum Steering Committee and the board of the North Carolina Rare Disease Innovations Institute. Susan’s has a passion for ensuring the patient voice is heard and understood and advancing initiatives ensuring patient’s access to resources and therapies.
Dr. Asokan is Professor & Director of Gene Therapy in the Duke Department of Surgery with a secondary appointment in Molecular Genetics & Microbiology.
Originally trained as a chemist, his lab blends the fields of protein engineering, RNA biology and virology to enable gene therapy and gene editing platforms. His lab is focused on translating these innovative synthetic virology platforms into transformative, new medicines. He also founded several gene therapy startups (StrideBio, TorqueBio) that are working to advance these therapeutic modalities. Prior to joining Duke, he was on the faculty in the Departments of Genetics and Biochemistry & Biophysics at UNC Chapel Hill, where he also obtained his doctoral degree.