Our Team
KCNQ2 Cure Alliance's Board of Directors is comprised of individuals dedicated to advancing research and supporting families of children and adults with KCNQ2-related disorders.
Jim Johnson, President, USA
A seasoned digital media, software executive and a product development leader. Jim is the program director of digital transformation at premier experience consultancy Stellar Elements. In his leadership role at Stellar, Jim is responsible for growing the development of digital solutions with companies at enterprise scale with global development teams.
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, which was later acquired by Ernst & Young. Jim has worked closely with Fortune 500 companies Boeing, FedEx, Disney, Intuit, Fidelity, Comcast, and Cisco, providing consulting and strategy on their digital properties.
Sara James, Vice-President, Australia
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 NBC Today Show news desk. 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 American Australian Association Limited, the Australian-American Fulbright Commission, 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, USA
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 medical and financial experience to benefit those affected by rare disorders. She is a founding board member of the Global Genes Project, one of the world's leading rare disease patient advocacy organizations, 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 with their five children in San Francisco.
Scotty Sims, Secretary, USA
Before her career as a crisis therapist, where she provided support and assessment to children and adults with severe and persistent mental illness, Scotty served as a forensic interviewer, trained to work with children who were victims of sexual abuse for multidisciplinary teams and the court system. Drawn to helping others, she found purpose in roles that allowed her to support people facing significant challenges.
After her daughter was born and diagnosed with KCNQ2-DEE, Scotty identified a lack of support systems or resources for caregivers of those with KCNQ2-related disorders. This led her to create the international KCNQ2 parent support group, a community connecting families and caregivers. Through this group, she met other families who shared a vision for support and advocacy, leading to the first KCNQ2 summit in Colorado, which brought together families, clinicians, researchers, and industry stakeholders. Recognizing the need for ongoing resources and research funding, Scotty co-founded the KCNQ2 Cure Alliance, which is committed to advancing support and research initiatives. Scotty Lives in Denver with her husband and two children.
Matt Fox, Board Member, USA
Matthew Fox is a serial entrepreneur, having founded and led multiple companies across several verticals. Prior to SpotGamma, Matthew was in the healthcare field where he led Q-State Biosciences as CEO, launched a genetic research company, Pairnomix, LLC, and oversaw corporate strategy on the executive team at the pharmaceutical company Upsher-Smith.
Earlier in his career, Matthew was a professional global healthcare investor in New York City, Washington DC, and most recently in Zurich, Switzerland at Bank am Bellevue. Matthew now lives with his wife and children in Edina, Minnesota, where he has served as Treasurer for the Edina School Board. Matthew holds a B.A. in Neuroscience and Behavior from Wesleyan University (CT).
Colin Sanford, Board Member, USA
Colin’s career spans more than 25 years of corporate and product communications experience in the life science and biotechnology industries. Much of his work has focused on developing and managing communications programs for innovative early-stage companies developing novel discovery technologies and new therapeutics. He currently serves as Executive Vice President of Bioscribe, leading the agency’s new business initiatives and providing strategic counsel across a portfolio of life science tools, biopharmaceutical, and clinical testing clients. In addition to more than 10 years as a senior partner at Bioscribe, he served as Vice President, Marketing and Communications for Syapse, a real-world evidence company enabling clinical and regulatory decision-making in precision oncology and has held leadership roles with large public relations agencies including Real Chemistry, The Corkery Group, and Ketchum. Colin received a BA in History from the University of California, Santa Barbara. He and his wife, Katherine, live in the North San Francisco Bay Area with their three children.
Anja Zimmerman, Board Member, USA
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 would require long-term care, Anja and her family chose to move back to Southern California, where they enjoyed ample support from their family members. She is currently doing freelance work for several clients and volunteering time for KCNQ2 Cure by supporting their marketing, social media, and public outreach efforts.
Staff
Brooke Babineau, PhD, Scientific Director
Brooke is currently a Senior Scientist at Encoded Therapeutics where she leads drug development initiatives aimed at providing therapeutic options for pediatric central nervous system disorders, including developmental epileptic encephalopathies. Brooke has a lifelong passion for serving individuals with neurodevelopment disorders which has fueled her academic pursuits in neuroscience, to better understand the relationship between the brain and behavior. Brooke has also taken opportunities to serve various communities including roles as a steering committee member for a disability centered non-profit organization, serving on her workplace diversity, equity and inclusion employee resource team, and serving as a board member and education resource coordinator for her local Coastside Family Club. Brooke lives on the beautiful Pacific Coast with her husband and son.
Marissa LaDue, MPH, Program Manager
Marissa brings over six years of expertise from the Cardiovascular Research Foundation, where she managed educational programs and events for Interventional Cardiologists. Her journey also includes a role in community engagement at the Michael J. Fox Foundation for Parkinson’s Research, where she witnessed firsthand the profound impact of community on scientific discovery. Additionally, Marissa has managed population health improvement initiatives in Western New York and supported the mission of Girls on the Run of Buffalo.