KCNQ2 Cure Alliance's Board of Directors is comprised of individuals dedicated to advancing research and supporting families of children and adults with KCNQ2 developmental and epileptic encephalopathy.
The Board is actively engaged in generating funding for research; fostering collaborations with physicians, scientists, other patient advocacy organizations, and the biopharmaceutical industry; raising awareness and educating the broader community, and providing support to families affected by KCNQ2 worldwide.
Our board and officers are parents and professionals who volunteer their time, without compensation for their service, so that over 95% of all funds donated go to finding a cure. Our goal is to find a treatment as quickly as possible that will help give our children fuller, higher functioning lives.
Jim Johnson, President, is a seasoned digital media, software executive and a product development leader. Currently, Jim is the executive director of digital media at premier branding agency Monigle Associates. In his leadership role at Monigle, Jim is responsible for growing the reach of the companies digital footprint by working with organizations to expand their branding presence through industry-leading digital asset management solutions.
Prior to his current role, Jim served on the executive management team at the digital agency EffectiveUI. During his five year tenure as Vice President of Business Development and Client Services, the company tripled its revenue and had a successful exit with a sale to WPP – the world’s largest communication services company.
Previous executive management roles include running product management for local search technology pioneer Local Matters and leading the software development team for start-up Teach.com - later acquired by Ernst & Young. Originally a programmer, Jim has held diverse roles running sales, product management, design and development teams. Jim has worked closely with Fortune 500 companies Boeing, FedEx, Disney, Intuit, Fidelity and Cisco providing consulting and strategy on their digital properties.
Sara James, Vice President, is an Emmy Award-winning journalist and author. James has covered Australasia for NBC, CNN, and PBS. James is a featured commentator on Australia’s ABC News Breakfast. Her American in Oz segment offers a savvy take on US politics. James moved to Melbourne from New York, where she served as a Correspondent for Dateline and NBC News and guest-anchored on the news desk of the NBC Today Show. James has won a string of awards and reported on the Taliban, modern-day slavery in Sudan, the Bosnian War Crimes Tribunal, Australia’s Stolen Generation and 9/11 in her hometown. James is a Director of the Australian-American Fulbright Commission, a Director of the American Australian Association, and a founding member of GETA - Genetic Epilepsy Team Australia. James is the author of An American in Oz, co-author of The Best of Friends, and editor of An Extraordinary School.
Caroline Loewy, Treasurer, is a biopharmaceutical and financial executive with over 25 years of experience in the field. She currently serves on the board of directors of publicly-traded companies, including Aptose Biosciences, CymaBay Therapeutics, and PhaseBio Pharmaceuticals. Caroline has held the position of Chief Financial Officer of both public and private biopharmaceutical companies. Prior to her roles in company management, Caroline spent 11 years as a senior biotechnology equity research analyst at Morgan Stanley and Prudential Securities.
Caroline has leveraged her experience in the medical arena and financial expertise to benefit those affected with rare disorders. She is a founding board member of the Global Genes Project, one of the leading rare disease patient advocacy organizations in the world, serves on the steering committee for the Forum for Collaborative Research—Rare Diseases Forum, and the Advisory Board of TGen’s Center for Rare Childhood Disorders. She and her husband, Gregg Alton, live in San Francisco along with their five children.
Scotty Sims, Secretary. Prior to her career as a crisis therapist, where she provided support and assessment to children and adults with severe and persistent mental illness, she was a forensic interviewer, specially trained to interview children who were victims of sexual abuse, for law enforcement, child protection, and the court system.
After her daughter was born and diagnosed with KCNQ2 encephalopathy, Scotty started an international KCNQ2 parent support group to provide support for families struggling with a diagnosis of KCNQ2 developmental and epileptic encephalopathy.
Alongside her husband Jim, Scotty hosted the first international KCNQ2 Summit in 2014 with over 20 families traveling from around the world.
Patrick Roberts is an English as a Second Language teacher in Montgomery County, Maryland. He has been teaching since 2005, focusing on literacy and cognitive development. His daughter Lucy was diagnosed with KCNQ2 epileptic encephalopathy at 2 months old. He and his wife Megan Roberts love taking Lucy for walks, playing her music and finding ways to make her smile and laugh. He is pleased to serve as a parent representative on the KCNQ2 Cure board to raise awareness about KCNQ2 and work with families to share their experiences. He was born and raised in upstate New York but has also lived in Seattle, New York City, Washington, D.C. and Santiago, Chile. He and his family now live in Takoma Park, Maryland.
Anja Zimmerman was born and raised in Germany, before moving to Great Britain to study Graphic Design. This is where she met her husband with whom she moved to Southern California. While enjoying life in the Golden State, Anja pursued a career in the creative industry, working as a graphic designer and Design Manager for various companies in Southern and Northern California. While living in Northern California, their second child was born, who received the KCNQ2 diagnosis. When it became apparent that this disease will require long term care Anja and her family chose to move back to Southern California, where they enjoy ample support from their family members. In the last 2 years, Anja has put her career on hold and dedicated much of her time towards her daughter and her complex needs. Outside of daily therapy sessions, play time and special care, she is currently doing freelance work for several clients and volunteering time for the KCNQ2 foundation by supporting their marketing, social media, and public outreach efforts.
Megan Roberts works closely with the foundation leadership on outreach, advocacy, strategy, and fundraising to advance the Alliance's mission. She has held various positions in the international policy field, with a focus on conflict, technology, and international development and cooperation. Her daughter Lucy was born in 2014 and diagnosed with KCNQ2 encephalopathy at two months old. She lives with her family in Takoma Park, Maryland.