Meet Our KCNQ2 Cure Team

Dedicated to supporting those impacted by KCNQ2-Related Disorders through research, education, and advocacy.

Meet Our KCNQ2 Cure Team

Dedicated to supporting those impacted by KCNQ2-Related Disorders through research, education, and advocacy.

Staff

Website-Favicon-72x72

At the KCNQ2 Cure Alliance, our staff brings together expertise, compassion, and a shared commitment to improving outcomes for those impacted by KCNQ2-related disorders (KRD). Every member of our staff plays a vital role in advancing research, raising awareness, and advocating for quality care. We’re here to make a difference, together.

Scotty Sims, Executive Director

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 and resources for caregivers of those with KCNQ2-related disorders. This led her to create the international KCNQ2 caregiver support group. 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. Scotty lives in Colorado with her husband and two children.

Scotty Sims, MEd

Executive Director

Brooke Babineau, PhD, Scientific Director

Brooke is currently a Senior Scientist at Encoded Therapeutics, where she leads drug development initiatives to provide therapeutic options for pediatric central nervous system disorders, including developmental epileptic encephalopathies. Brooke has a lifelong passion for serving individuals with neurodevelopmental 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, on her workplace diversity, equity, and inclusion employee resource team, and 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.

Brooke Babineau, PhD

Scientific Director

Michelle Kielhold, PhD, Science Program Manager

Currently a postdoctoral scholar at Oregon Health & Science University, Michelle has dedicated her academic career to exploring the genetic foundations of neurobiological disorders, including autism spectrum disorder, schizophrenia, and Parkinson’s disease. She earned her PhD in Behavioral and Systems Neuroscience with the goal of advancing the way mental healthcare is understood and delivered. Passionate about bridging the gap between science and the public, Michelle is committed to making research more accessible and meaningful to the broader community. She lives in the beautiful (but often rainy) Pacific Northwest with her partner and their pets, Rufus the dog and Beans the cat.

Michelle Kielhold, PhD

Science Program Manager

Rivka Felsher, Development & Fundraising Manager

Rivka has over three decades of experience in nonprofit management and fundraising, business administration, private and public higher education administration and instruction, educational consulting, editing, and writing. She is the COO of The Mussar Institute and holds a Ph.D. in Educational Leadership and Research Methodology from Florida Atlantic University. Rivka is also the parent of a teenage son with KCNQ2-DEE and is passionate about helping to raise awareness and support research to help treat and perhaps one day cure children and adults impacted by this rare disease. She resides in Southeast Florida with her two children and is an avid potter and painter.

Rivka Felsher

Development & Fundraising Manager

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.

Marissa LaDue, MPH

Program Manager

Board of Trustees

Website-Favicon-72x72

Guiding Our Mission with Expertise and Vision

KCNQ2 Cure’s Board of Trustees governs the organization and is dedicated to advancing our vision of a world with treatments or a CURE for KCNQ2-related disorders. Our Board includes patient-families, researchers, and community members who share our commitment to improving outcomes for families.

Jim Johnson, Board Chair

A seasoned digital media, software executive, and 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 scaling the development of digital solutions for companies at the enterprise level, working 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 leading product management at the local search technology pioneer Local Matters and leading the software development team at the start-up Teach.com, which was later acquired by Ernst & Young. Jim has worked closely with Fortune 500 companies, including Boeing, FedEx, Disney, Intuit, Fidelity, Comcast, and Cisco, providing consulting and strategy for their digital properties.

Jim Johnson

Board Chair

Sara James, Vice Chair

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.

Sara James

Vice Chair

Caroline Loewy, Treasurer

A biopharmaceutical and financial executive with over 25 years of experience, she currently serves on the boards of directors of publicly traded companies, including Aptose Biosciences, CymaBay Therapeutics, and PhaseBio Pharmaceuticals. Caroline has served as Chief Financial Officer at 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, and serves on the steering committee for the Forum for Collaborative Research—Rare Diseases Forum. She and her husband, Gregg Alton, live with their five children in San Francisco.

Caroline Loewy

Treasurer

Colin Sanford, Secretary

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.

Colin Sanford

Secretary

Graham T. Dempsey, PhD

Graham T. Dempsey, Ph.D., is the Co-Founder and CEO of Quiver Bioscience, a Cambridge-based biotech company that is decoding neurons to unlock breakthrough CNS therapeutics. Graham is leading Quiver to advance the company's first products derived from their proprietary discovery platform to the clinic, including a non-opioid therapeutic for chronic pain and a disease-modifying precision medicine for a devastating neurodevelopmental disorder. Prior to this role, Graham served as the Chief Scientific Officer, directing the planning and execution of all scientific, medical, engineering and AI/machine learning activities at the company. Since the company’s inception, he successfully led the development and rapid evolution of the company’s technology platforms as well as its first small molecule and antisense oligonucleotide CNS therapeutic programs, leading to several foundational patents and peer-reviewed publications. Over this period, Graham also led more than a dozen pharma collaborations along with successful funding of >$30M in grants from non-dilutive funding sources such as the NIH SBIR Programs and CNS Foundations. He also serves on the Scientific Advisory Board of the Dan Lewis Foundation for Brain Regeneration Research and the editorial board of Molecular Therapy Nucleic Acids. Graham holds a B.A. in biochemistry and biophysics (Roy Vagelos Scholar) from the University of Pennsylvania and a Ph.D. in biophysics from Harvard Medical School, where he co-invented novel, fluorescence-based imaging platforms for nanoscale investigation of biological systems, including super-resolution imaging (stochastic optical reconstruction microscopy or STORM) that was subsequently commercialized by Nikon Instruments.

Graham T. Dempsey, PhD

Board Chair

Matthew Fox, Board Member

Matthew Fox is a serial entrepreneur who has founded and led multiple companies across several verticals. Prior to SpotGamma, Matthew worked in healthcare, where he led Q-State Biosciences as CEO, launched the 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).

Matthew Fox

Board Chair

Kiran Ready, MD, MBA, Board Member

Kiran Reddy is a Senior Managing Director in the Blackstone Life Sciences group, joining in May 2020. Dr. Reddy was previously the President & CEO of Praxis Precision Medicines, which he co-founded in November 2016. Previously, Dr. Reddy was at Biogen, where he served on the corporate development and strategy leadership team. Dr. Reddy was also an Associate Partner at Third Rock Ventures. He supported and managed various portfolio companies, with a focus on new company formation and investments. He was a member of the founding team and interim Chief Business Officer at SAGE Therapeutics through its IPO. Dr. Reddy was part of the team that launched Foundation Medicine. Dr. Reddy holds an MD and an MBA from Georgetown University. He completed his medical internship and neurology residency at Harvard/Massachusetts General Hospital. Dr. Reddy was previously a Howard Hughes Medical Institute Science Fellow.

Kiran Ready, MD, MBA

Board Chair