About Batten Disease News
Batten Disease News is a digital platform intended to provide the Batten disease community with the most recent news and information on the disease, as well as first-hand community perspectives from our caregiver columnists.
All articles on Batten Disease News are original content produced by in-house writers and editors. Occasionally, we seek the opinion of outside experts for interviews and Q&As.
The publishing team at Batten Disease News is made up of science writers and editors, most of whom have PhDs in the life sciences; veteran journalists; and columnists who are members of the Batten community. Together, they ensure that all content published on Batten Disease News is relevant, accurate, informative, relatable, and easy to understand.
Our daily reporting includes:
- news stories detailing the latest research and information on Batten disease
- columns by members of the Batten community
- feature stories and community profiles
- in-depth reports
- interviews and Q&As with leading experts
- comprehensive conference coverage
- resource and informational pages
Editorial and fact-checking process
Each piece of content is carefully selected and written with the Batten community in mind. Sources for news stories and resource pages include peer-reviewed studies, press releases, announcements, interviews, webinars, and conference sessions, among others. All articles go through a stringent fact-checking and editing process to ensure they are accurate, objective, comprehensive, and well-explained.
Our columns are written by Batten disease caregivers who provide an intimate look at what it’s like to live with the disease. Their stories offer a realistic first-hand account of various aspects of the disease, in addition to providing inspiration and hope to our patient communities. While columns are largely opinion and perspective pieces, each one still goes through a comprehensive editing and fact-checking process to ensure clarity, accuracy, and fairness.
Batten Disease News upholds the highest levels of journalistic integrity, with the goal of maintaining objectivity and transparency. As such, editorial content published on the website is not influenced in any way by its advertisers. While relevant and responsible sponsorships are accepted, editorial content is produced independently of advertising and is not subject to undue influence from either external or internal factors.
Advertising content is clearly marked and separated from editorial content throughout the website. Revenue generated from advertising and sponsorships allows us to continue our mission of informing and empowering members of the Batten community.
For more information, see our Advertising Policy.
About BioNews, Inc.
BioNews, Inc., is independently owned and operated. It does not produce, market, or sell any product intended to treat, manage, or diagnose Batten disease or any other condition.
The focus of BioNews is to empower patients living with rare disease. We provide a safe space for those affected by rare diseases to form meaningful and impactful relationships.
Our ability to connect with others allows us to provide each individual with understanding, empathy, and support. At BioNews, we make a promise to our rare disease communities to deliver trustworthy information to help educate, engage, and champion the patient voice.
For more information, see our Culture page.
Kellie graduated from Trinity University in 2012 with a double major in communication and Russian. She previously worked as an editor at several newspapers, including the Daily Press on the Virginia Peninsula. In addition to several newspaper awards, she was awarded a Fulbright fellowship in 2012 and spent a year teaching English at a university in Russia. She also served in the U.S. Army for eight years.
Patrícia holds a PhD in medical microbiology and infectious diseases from the Leiden University Medical Center, Netherlands, and completed a postdoctoral research fellowship at the Instituto de Medicina Molecular, Lisbon, Portugal. Her work in academia was mainly focused on molecular biology and the genetic traits of infectious agents such as viruses and parasites. Patrícia earned several travel awards to present her work at international scientific meetings. She is a published author of several peer-reviewed science articles.
Shana graduated from the University of North Carolina at Pembroke in 2003 with a bachelor of science in mass communications with a concentration in journalism. She previously worked at several newspapers in the Southeast, including editor of The Virginia Gazette in Williamsburg, Virginia, Tidewater Review in New Kent, Virginia, and the community newspapers for The Virginian-Pilot in Norfolk, Virginia. She previously has been honored by the South Carolina and Virginia press associations.
Brad graduated from the University of Hawaii at Manoa in 2016 with a double major in history and journalism. He previously worked as a copy editor for Nella Media Group, managing editor for Ka Leo O Hawaii, and executive editor for Abstract Magazine. Brad has cystic fibrosis, a bilateral lung transplant, and is deaf.
Kevin graduated from North Carolina State University with a B.A. in English with concentrations in film studies and creative writing. He worked at NCSU’s student newspaper throughout college, and has freelanced for different publications. In 2017, he published an article in the MDA Quest magazine about going to college with a disability.
Ana holds a PhD in immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. Ana was awarded two FCT fellowships and has won the Portuguese Immunology Society Best Paper and Best Poster award in 2009 and 2010, as well as the CESPU International Research Award in 2010. After leaving the lab to pursue a career in science communication, she served as the director of science communication at iMM Lisbon.
Jake received his undergraduate degree from the University of Connecticut and his graduate degrees from the University of Florida (’88, ’92), where he majored in reproductive physiology. He spent 26 years in higher education teaching, conducting biomedical research and serving in administration. He’s received two university teaching awards, a graduate research mentorship award, two student government association leadership awards and has served as the principal investigator on two National Science Foundation teacher/scholar mentorship grants.
Marisa holds a Master of Science in cellular and molecular pathology from the University of Pittsburgh, where she studied novel genetic drivers of ovarian cancer. Her areas of expertise include cancer biology, immunology, and genetics, and she has worked as a science writing and communications intern for the Genetics Society of America.
David Boddiger, Senior Copy Editor
David graduated from the University of Illinois at Chicago in 1995 with a degree in political science. He has worked as a news writer and editor in the U.S. and Latin America for over 20 years, covering a range of topics from politics to health. In 2010, he received an Addiction Studies Program for Journalists Award from Wake Forest University School of Medicine for his reporting in The Lancet on addiction and the illicit drug trade in Mexico.
Grace served as editor-in-chief for BioNews from June 2016 to June 2019 before returning to editing. A longtime newspaper editor and reporter, she was a Pulitzer Prize nominee for an investigative series into eye surgeries wrongly conducted outside a clinical trial. She holds a master’s degree in international relations from the University of Chicago and a bachelor’s degree in political science from Rutgers University. Grace lives in France with her extended people-and-pets family.
Marta holds a biology degree, a master’s in evolutionary and developmental biology, and a PhD in biomedical sciences from the University of Lisbon, Portugal. She was awarded a research scholarship and a PhD scholarship, and her research focused on the role of several signaling pathways in thymus and parathyroid glands embryonic development. She also previously worked as an assistant professor of an annual one-week embryology course at the University of Lisbon’s Faculty of Medicine.
Lindsey earned her PhD in neuroscience from Emory University in Atlanta, where she studied novel therapeutic strategies for treatment-resistant forms of epilepsy. She was awarded a fellowship from the American Epilepsy Society in 2019 for this research. Lindsey also previously worked as a postdoctoral researcher, studying the role of inflammation in epilepsy and Alzheimer’s disease.
Steve holds a PhD in biochemistry from the Faculty of Medicine at the University of Toronto, Canada. As a medical scientist for 18 years, he worked in both academia and industry, where his research focused on the discovery of new vaccines and medicines to treat inflammatory disorders and infectious diseases. Steve is a published author in multiple peer-reviewed scientific journals and a patented inventor.
Teresa holds her Master of Science in cell and molecular biology from Coimbra University, Portugal. She was a researcher and science communicator for several years at the Institute for Research and Innovation in Health in Oporto, Portugal. From 2013, she has held a fellowship working with Pulmonary Hypertension Europe as a patient advocate, social media/website manager, public relations officer, and translator. Her work has been focused on providing patients access to treatments, raising awareness for pulmonary hypertension, and promoting patient empowerment.
Somi graduated from Imperial College London in 2011 with a PhD in cellular and molecular immunology. She worked as a medical writer at several medical communications agencies in London, including Core Medica. Besides science writing, Somi works as a registered associate nutritionist, helping adults and children improve their diets to prevent type 2 diabetes.
Patricia holds her PhD in cell biology from the University Nova de Lisboa, Portugal, and has served as an author on several research projects and fellowships, as well as major grant applications for European agencies. She also served as a PhD student research assistant in the Department of Microbiology & Immunology, Columbia University, New York, for which she was awarded a Luso-American Development Foundation (FLAD) fellowship.
Margarida is a biochemist (University of Porto, Portugal) with a PhD in biomedical sciences (VIB and KULeuven, Belgium). Her main interest is science communication. She is also passionate about design and the dialogue between art and science.
Vanda is a biochemist with a PhD in biomedicine from the University of Porto, Portugal. She conducted her postdoctoral research first at the Bristol Medical School, U.K., studying the insulin-PI3K/Akt signaling pathway in diabetic nephropathy, then at the Institute of Molecular Pathology and Immunology of the University of Porto, where her focus was on glycosylation in lupus nephritis and inflammatory bowel disease. She next made the switch to science publishing, handling papers in biochemistry, molecular biology, and immunology.
Mary graduated from Wayne State University with a degree in journalism. She began her career at United Press International, then spent a decade reporting for the Bureau of National Affairs, Inc. (now Bloomberg Industry Group). Mary has written extensively for The New York Times, and her work has appeared in publications such as Time, Newsweek, Fortune, and the Chicago Tribune. She’s won a Society of Professional Journalists award for outstanding reporting.
Hawken graduated from the University of Southern California (USC) in 2019. Before joining BioNews, he wrote for the Washington Post’s video game and esports section, Launcher, where he still contributes as a freelancer. Hawken is also a columnist for BioNews, focusing on his experience with Duchenne muscular dystrophy for Muscular Dystrophy News Today. His work has appeared in Dot Esports, The Orange County Register, KTLA 5, and The Sacramento Bee. He won a Webby for virtual reality journalism at USC.
Maureen graduated from the Medill School of Journalism at Northwestern University with a social science concentration in sociology. She was a finalist for the New Jersey Press Association “Rookie of the Year” and won several newspaper awards in her years as a reporter. She also worked as a producer for Court TV, and then spent 10 years overseas as a diplomat in Asia and Europe.
David is a veteran editor with 28 years in newspapers, including management and staff work at The New York Times, The International Herald Tribune, The St. Petersburg Times, The Knoxville News-Sentinel, and The San Antonio Light. He’s taught English at six colleges and earned his bachelor’s in journalism from the University of South Carolina, with later master’s degrees in theater and English and doctoral work in English. He is also a member of the Screen Actors Guild.
Rob has had a long career in journalism, getting his start as an editorial cartoonist at the Baltimore Sun before moving to the upper Shenandoah Valley in 2004 where he served as a reporter and editor at a number of newspapers and magazines in Virginia, West Virginia, and Maryland. A graduate of the University of Maryland with a degree in English, Rob lives with his family in Charles Town, West Virginia.
Sandee comes from a newspaper and magazine background, with 12 years’ experience at the Calgary Herald in the areas of business and community news, and special sections. She has an English degree from the University of Calgary and a master’s in journalism from the University of Western Ontario.
Jeff has been a writer and editor for 45 years. After a 30-year career as a daily newspaper writer, editor and manager, he began a freelance business that specialized in healthcare topics, writing about technology trends and profiling hundreds of physicians about their professional and personal accomplishments. He joined BioNews in 2016. Jeff is a U.S. Air Force veteran and majored in English at Delaware State University.
Paige graduated from the University of Southern California in 2017 with a major in English literature and a minor in communications, and has been working at digital health publications ever since. Before joining BioNews, Paige was a managing editor at The Mighty, where she focused on creating content for the chronic illness community.