M.D. - Founder & President, DADA2 Foundation
Dr. Chip Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee, and continues to hold his clinical faculty appointment at Vanderbilt. Dr. Chambers' two children were diagnosed with Deficiency of Adenosine Deaminase 2 or DADA2 in March 2014, just one month after the first articles describing the disease were published in the New England Journal of Medicine. He has spent the last eight years making connections among clinicians treating patients with DADA2 all over the world, as well as patients, their families, and researchers studying the enzyme.
In 2016, Dr Chambers Founded the DADA2 Foundation and held the Inaugural International Conference on DADA2 in November of 2016. As far as we know this is the shortest time between a disease being first described in the medical literature and the convening of an international meeting of this scale — less than three years. Nearly every physician and researcher who has touched this disease in some way was present. The Second International DADA2 Conference was held in November of 2018. There were 123 physicians and scientists from 25 countries including China, Japan and Saudi Arabia & 93 patients and families from 13 countries all in attendance. The Third International Conference on DADA2 was held virtually in November of 2020 due to COVID and there were over 500 physicians and scientists from 39 countries that attended.
Ph.D, Chief Scientific Officer
Dr. Cowsert received his Ph.D. from the Georgetown University School of Medicine and completed his postdoctoral studies at the National Cancer Institute. Dr. Cowsert has over 25 years’ of experience in the biotech industry, where he led drug development teams and sat on clinical development teams. Dr. Cowsert also led multiple technology teams resulting in Dr. Cowsert being named an inventor on 145 US Patents. Dr. Cowsert sat on the NIH, Rare Disease Clinical Research Network (RDCRN), Hyperphenylalaninemia Consortium, and the NIH, RDCRN, Consortium of Patient Advocacy Groups.
Mary Makley first learned of DADA2 in early 2016 when an acquaintance called her out of the blue to talk about the newly discovered disease his children had. Dr. Chip Chambers was in the formative stages of creating the DADA2 Foundation and wanted to talk about how Makley’s skills in documentary filmmaking might be put to use in helping spread the word about this new disease. That initial call led to years of collaboration on videos for the Foundation conferences, website, and YouTube Channel.
In August 2021, after over 30 years of creating award winning documentary programs, Makley put her communication and project management skills to work as Operations Director for the DADA2 Foundation. She has been working since then to build the basic infrastructure of the Foundation including IT, data management, communications, fundraising and program development. She is inspired every day by the stories of the DADA2 community.
M.Ed. – Director of Communications & Strategic Initiatives
Kristen is a writer by trade and an organizer by habit, and a healthcare advocate by passion. She joined the DADA2 Foundation in 2020 to initially support the Foundation in speaking engagement presentations, and has since grown with the Foundation to guide communications, fundraising and other strategic initiatives critical to the Foundation’s future success.
Kristen came to the Foundation with 20 years of experience in strategic communications, largely in the healthcare realm and also in non-profit and political arenas. She has helped hospitals win public support through times of intense change – from mergers & sales, to reputational challenges & regulatory issues, to adapting to new ways of care. SHe has also served as director of communications for mission-driven non-profits & start-ups. Kristen carries a B.A. in political science from Johns Hopkins University, an M.Ed. in Organizational Leadership from Vanderbilt University’s Peabody College, and spent time interning and writing speeches in the White House, the United States Senate, and the Tennessee General Assembly.
M.S., Certified Genetic Counselor – Research Engagement Director
Julie joins us as a Genetic Counselor with a passion for working with families affected by rare disease. At the Icahn School of Medicine at Mount Sinai, she became involved with the Fabry Disease Family Registry project, linking families’ medical information into a database so that researchers could develop an enzyme replacement therapy for those patients. She sat bedside with patients in The Gaucher Disease clinic at Mount Sinai, where weekly enzyme replacement therapy had already been initiated, so she could learn first-hand about the challenges of managing a progressive disease. Working as a counselor at Camp Sunshine for the rare disease Fanconi Anemia, she learned to support families as they faced different stages of a progressive illness, with children needing bone marrow replacement treatment. More recently, at the Fetal Center in Vanderbilt Children’s Hospital, she teamed with doctors to advise families expecting a newborn with genetic disease, coordinating post-natal care for the best possible outcome. She has a B.A. in Neuroscience from the University of Illinois at Urbana-Champaign and a masters degree in Genetic Counseling. Julie has been an at-home parent for her children, Jack and Emmylou, and enjoys designing and tailoring women’s clothing.
M.A. - Project Coordinator
Bridget spent many years in the non-profit arena serving a variety of organizations from historic preservation to education and performing arts to public media. She enjoys managing projects, successfully completing projects, and starting new ones. Some of her favorite projects include serving as the script copy editor on the public health-based NoiseFilter podcast, working as project coordinator on a continuing education film with AETC New Orleans (Aids Education Training Center), serving as an elementary school teacher in Nashville and New Orleans, managing volunteers at the NCAA Men’s Final Four, and producing numerous documentary and music performance programs for public television and national PBS broadcast.
She holds Master of Arts degrees in both Arts Administration and Teaching for Early Childhood from the University of New Orleans. Now residing in Houston, she's a native of New Orleans who has lived in Nashville, San Francisco and San Diego. She loves to thrift and travel, and she's always planning her next adventure.
Katherine Bell is an editor and writer in New York City, where she lives with her wife and two daughters. Her younger daughter was diagnosed with DADA2 in 2015, after two major strokes. Katherine has been the editor in chief at the business and economics website Quartz and at Barron’s magazine, as well as the editor of Harvard Business Review’s digital platforms. She is currently editor in chief in global marketing at Goldman Sachs.
Heather is currently serving as the Chief Financial Officer of the Memorial Hermann Health Plans. A CPA, she has 30 years of experience in accounting, finance, budgeting, auditing and treasury functions in both public accounting (15 years at EY) and various payors and providers in the healthcare space.
Bill Frist, M.D.
Senator William H. Frist, MD is a heart and lung transplant surgeon and former United States Senate Majority Leader, representing Tennessee in the U.S. Senate from 1995 - 2007. As the founder of the Vanderbilt Multi-Organ Transplant Center (today the busiest heart transplant center in the world), he performed over 150 heart and lung transplants and authored over 100 peer-reviewed medical articles.
His leadership in the U.S. Senate was instrumental in the passage of the 2003 Medicare Modernization Act that established Medicare Advantage and the Medicare Prescription Drug Benefit, and the historic PEPFAR legislation that provided life-saving HIV treatment globally to 25 million people.
Senator Frist currently serves as Chair of the Global Board of the Nature Conservancy, the largest conservation organization in the world. He is a founding partner of Frist Cressey Ventures and special partner and chairman of the Executives Council of the health service investment firm Cressey & Company.
He and his wife Tracy live on their historic farm Old Town in Franklin, Tennessee.