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.
Shivani is a high school senior in Atlanta, Georgia. She is the Host of The Rare Disorder Podcast, a podcast dedicated to spreading awareness for rare diseases through elevating the voices of those affected and interviewing experts with two series: Meet a Fighter & Meet an Expert. Her personal connection to the rare disease community traces back to her grandmother who was affected by a rare pancreatic cancer.
Through Shivani’s podcast, her main goal is to empower patients in their identity through the use of storytelling because she is a firm believer that people will always remember stories and experiences over medical statistics and terms – whether that is a relation point that resonated with them, their struggle with receiving care, or anything else. And when patients share their experiences, it opens people’s hearts to the situation, and enables them to attain a first-hand experience.
Along with podcasting, Shivani does public speaking at rare disease conferences, involves herself in research, and advocates for legislation through Rare Disease Legislative Advocates.
Outside of her rare disease work, Shivani is a Red Cross Youth state officer and is very engaged in her school community through clubs, and for fun she likes to practice yoga (currently in training for her RYT 200), explore national parks and the great outdoors, visit new food spots and coffee shops, and hangout with her friends!
My name is Lavanya Rao. I have a background in pharma and healthcare, with undergraduate and graduate degrees from NC State. I believe in amplifying the voices of true rare disease heroes and helping their stories be told. In my spare time, I love reading non-fiction novels at a local coffee shop, listening to true crime podcasts and going on long hikes.
Jonathan Fonner is the Digital Marketing and Social Media Development Specialist for Rare Disease Innovations Institute.
Jon is senior at West Chester University, outside Philadelphia Pennsylvania, and is a Business Management major with a Digital Marketing minor. He has been on board with RDII since May 2021 where he was new to the rare disease world, but quickly became intrigued and continues to find personal connections every day. With Jon being so new to the rare disease word, he could understand the confusion many rare disease parents can have. Because of that Jon has made it as a goal when working for RDII to create posts that everyone can understand and relate to regardless of previous knowledge.
Through his schooling, life experiences growing up, and working for RDII, Jon has found a niche in social media development, growth, and maintenance. Since Jon has begun at RDII he has been responsible for the creation of our Instagram and twitter along side with the creation of posts and maintenance of all our platforms.
Outside of working for RDII, Jon likes to workout, play soccer for a local men’s league, watch sports with friends and attend concerts.
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.
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.
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.
Kay is the Executive Director of the Cystic Fibrosis Central/Eastern Carolinas Chapter located in Raleigh, which is responsible for Communications, Advocacy, Volunteer Development, Program Services and Fundraising for the Cystic Fibrosis Foundation within 60 of the 100 North Carolina counties.
She is a Summa Cum Laude graduate of Mississippi University for Women and has spent her career in public health, education and leadership positions for organizations including: the Durham Public Education Network, the Oktibbeha County Schools, the March of Dimes, and the United Way of America.
Kay has served on three Governor’s Commissions including The Reduction of Infant Mortality under three NC Governors, Governor Hunt’s Task Force on Neural Tube Defects and the Governor’s Task Force on After-School Programs in North Carolina.
Kay enjoys spending time with her husband, nuclear physicist, businessman and educator and their two daughters and grandchildren. Kay has a busy life with her church, community and hobby of refurbishing homes.
Kay has been the Executive Director of the Cystic Fibrosis Chapter since March 2008. Her topic emphasizes the commitment of the Cystic Fibrosis Foundation to find a cure for this life limiting disease in our lifetime. Time is a critical issue for CF patients making it vital for our research to extend to correcting the defect at the molecular level. There is hope for a cure.