Yesterday, the White House recognized Emily Kramer-Golinkoff of Bala Cynwyd, PA among nine individuals as “Champions of Change” for precision medicine who are making a difference in transforming the way we improve health and treat disease. The Champions of Change program was created as an opportunity for the White House to feature individuals doing extraordinary things to empower and inspire members of their communities.
Emily Kramer-Golinkoff, a 30 year old with advanced stage cystic fibrosis and cystic fibrosis-related diabetes, is co-founder of Emily’s Entourage, a 501(c)3 that raises funds and awareness to accelerate new treatments and a cure for rare (nonsense) mutations of Cystic Fibrosis (CF). She is also Manager of Strategic Initiatives and Operations at the Penn Medicine Social Media and Health Innovation Lab. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised over $1.5 million since the organization’s founding in 2011, and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists in this area. With only 35 percent lung function, Emily spends over 3–4 hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease.
Emily has reached out especially to fellow members of the Jewish community. Indeed, the Ashkenazi Jewish population is “as vulnerable to cystic fibrosis as to Tay-Sachs.”
All nine “champions of change” embody the promise of the President’s Precision Medicine Initiative, which was launched earlier this year to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments.
Biographies of the other laureates follow below.
Marcia Boyle, Towson, Maryland
Marcia Boyle is the president and founder of the Immune Deficiency Foundation (IDF). She has devoted her life to helping people diagnosed with primary immunodeficiency diseases (PI), which are a group of more than 250 rare, chronic disorders, affecting approximately 250,000 Americans, in which part of the body’s immune system is missing or functions improperly. Under Marcia’s leadership, IDF developed an electronic personal health record (IDF ePHR) specifically for the PI community that allows patients with these complex disorders to better track and manage their health. Marcia remains a steadfast champion for those living with PI through IDF’s ongoing advocacy, education and research initiatives.
Hugo Campos, Oakland, California
Hugo Campos is a data liberation advocate and leader in the e-patient movement. Hugo is an Emeritus Member of the Stanford Medicine X ePatient Advisory Board; member of the Stakeholder Advisory Board (SAB), National Steering Committee for pSCANNER (Patient-Centered SCAlable National Network for Effectiveness Research); former advisory board member for the UC San Diego Calit2 Health Data Exploration Project: Personal Data for the Public Good; and former member-at large for the Executive Committee of the Society for Participatory Medicine.
Elizabeth Gross Cohn, Sea Cliff, New York
Dr. Elizabeth Gross Cohn is an Associate Professor of Nursing and Public Health, and the Director of the Center for Health Innovation at Adelphi University. Using a community-engaged approach, the Center addresses urgent and emergent issues of health and health equity within New York State. Elizabeth also serves as the Associate Director of the Community Engagement Core of the Irving Institute for Clinical and Translational Research at Columbia University Medical Center. Her research focuses on the ethical and social issues at the intersection of precision medicine and health disparities. Her model for lab to living room translation promotes interactions between scientists and the communities they serve. Through this work she has developed an interactive graphic novel, a community education program on precision medicine, and a decision tool for community faith-leaders who are advising congregants on research participation. She is part of the leadership of the Communities of Harlem Health Revival, a member of the New York State Health Equity Council, a Fellow in the New York Academy of Medicine, and she mentors investigators in community-based and community-engaged research.
Amy Gleason, Wesley Chapel, Florida
Amy Gleason began her career in nursing and then discovered a passion for technology. She recognized that technology can improve healthcare, and spent years building and implementing electronic medical record and practice management technologies. In June 2010, her daughter was diagnosed with a rare autoimmune disorder, which opened her eyes to an entirely new set of challenges in the healthcare system. In her role as caregiver, she was responsible for keeping her daughter’s care organized, efficient, and effective. As the Chief Operating Officer of CareSync, Amy draws on these experiences to help patients and their families better coordinate care and improve health outcomes. Additionally, Amy proudly volunteers as the Vice President of Research for the Cure JM Foundation, a nonprofit that funds research, raises awareness, and supports families of children with Juvenile Myositis.
Amanda Haddock, Wichita, Kansas
Amanda Haddock is president and co-founder of Dragon Master Foundation, a nonprofit that strives to speed biomedical discovery by developing and implementing tools and technology to empower cancer researchers. Dragon Master Foundation’s pilot project is an initiative to build an open access, collaborative, multi-institute research infrastructure with innovative informatics and high quality data to empower the next wave of precision medicine approaches for cancer therapeutics. The database infrastructure will allow for unlimited future growth and has the capacity to impact all areas of biomedical research. Amanda’s son, David Pearson, died from brain cancer in 2012, a tragedy that brought the need for better research tools to her attention.
Howard Look, Palo Alto, California
Howard Look is the founder and CEO of Tidepool, a non-profit organization with the mission of reducing the burden of managing Type 1 Diabetes through their open source software. Tidepool works closely with diabetes device makers to liberate patient-owned health data and make it available through the secure Tidepool Platform. Tidepool’s work enables an ecosystem of intuitive and actionable diabetes applications as well as research based on patient-owned health data. Prior to Tidepool, Howard was VP of Software at TiVo, Pixar Animation Studios and Amazon. Howard has a BS in Computer Engineering from Carnegie Mellon University. His teenage daughter was diagnosed with Type 1 Diabetes in 2011.
Dorothy Reed, Somerset, New Jersey
Dorothy Reed formed the Sisters Network of Central New Jersey (SNCNJ) in 2000 with three other breast cancer survivors because of the absence of local support or culturally sensitive resources for African American women diagnosed with breast cancer. Within six months, SNCNJ’s monthly support meetings averaged 30 African American women. The organization’s purpose is to save lives by providing services, including encouraging 116 women to get a mammogram in 2014 and providing over 4,000 women and families with breast health information. In addition, Dorothy spearheads five annual outreach projects aimed at educating, supporting, and bringing awareness to the alarming statistics for African American women.
Anish Sebastian, Washington, District of Columbia
Anish Sebastian is the CEO and co-founder of Babyscripts Inc. Babycripts is the leading mobile therapeutics company in pre-natal care. Under his leadership, the company has raised more than $2 million in capital, developed and clinically validated the first in kind risk stratified approach toward pre-natal care, and commercialized its product in multiple markets. In addition to his professional responsibilities, Anish is an advocate of the consumer healthcare revolution serving as the lead organizer of the Quantified Self group in Washington D.C. As organizer, he leads the effort in establishing and growing the quantified-self movement (a data driven approach to self-knowledge) in the Washington metropolitan area.