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.

Website-Favicon-72x72

Staff

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

Scotty Sims, MEd

Executive Director

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.

JLL_HEADSHOT_EDITS-77

Brooke Babineau, PhD

Scientific Director

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.

Headshot Marissa

Marissa LaDue, MPH

Program Manager

Marissa LaDue, 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.

michelle_kielhold_intern

Michelle Kielhold, PhD

Science Communication Intern

Michelle Kielhold, PhD, Science Communications Intern

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.

GCSX_intern

Catalin Yturralde

Genetic Counselor Intern

Catalin Yturralde, Genetic Counselor Intern

Catalin is from San Diego, California, and is a current genetic counseling student at the University of Pennsylvania Perelman School of Medicine. She received her B.A. in Biology and German from Williams College in 2023 and previously worked at the Massachusetts General Hospital Cardiovascular Research Center. Catalin is passionate about improving access to clear, patient-centered health information and supporting families navigating rare genetic conditions. She is excited to join the KCNQ2 Cure Alliance as a GCSX Advocacy Intern. Catalin currently lives in Philadelphia and enjoys spending time outdoors whenever possible—as long as it’s not too cold.

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.

IMG_1449

Jim Johnson

Board Chair

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.

Headshot_SaraJames

Sara James

Vice 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.

Headshot_Caroline Loewy

Caroline Loewy

Treasurer

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.

Colin Sanford headshot_web

Colin Sanford

Secretary

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.

Graham_Dempsey

Graham T. Dempsey, PhD

Board Member

Graham Dempsey, Board Member

Graham T. Dempsey, Ph.D., is the Founder and Chief Scientific Officer at Quiver Bioscience, where he directs the planning and execution of all scientific, medical, engineering, and AI/machine learning activities at the company. Prior to Quiver, Dr. Dempsey was CSO at Q-State Biosciences, leading the development and rapid evolution of the company’s foundational technology platforms, as well as its first small-molecule and antisense oligonucleotide therapeutic programs. During his academic studies, Dr. Dempsey developed novel fluorescence-based bioimaging platforms and was part of the team that developed the super-resolution imaging technique stochastic optical reconstruction microscopy (STORM), which was subsequently commercialized by Nikon Instruments. He holds a B.A. in biochemistry and biophysics from the University of Pennsylvania and a Ph.D. in biophysics from Harvard University.

Matt Headshot

Matthew Fox

Board Member

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).

Kiran_Reddy_board_member

Kiran Ready, MD, MBA

Board Member

Kiran Ready, 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.