Gabi Conecker, MPH
President and Co-founder of the International SCN8A Alliance, founder and President of Wishes for Elliott, dedicated since 2014 to advancing SCN8A research
Gabi is mom to Elliott, now 10 years old, who struggles with one of the most severe strains of SCN8A mutations. Gabi founded Wishes for Elliott to fight for better treatment and research even before Elliott was diagnosed with SCN8A at 15 months. At diagnosis, the family received the one published article on SCN8A in children offering little to no guidance on care, treatment, or prognosis. Even though she was still working full time building maternal/child health programs in sub-Saharan Africa and caring for a severely medically fragile child, she was inspired to bring the passion and urgency of SCN8A families to the nascent but growing community of SCN8A researchers and clinicians – and do everything possible to improve understanding for better treatment and outcomes for all SCN8A children.
View a video about the decision to launch Wishes for Elliott, their initial SCN8A foundation.
Michael Hammer, PhD, Geneticist
Chief Scientific Officer and Co-founder of International SCN8A Alliance; founder and President of the Shay Emma Hammer Foundation which oversees and supports the dedicated SCN8A international patient registry
Dr. Hammer had a distinguished career with over 100 published articles as a geneticist focusing on anthropological studies of the evolution on humans. His daughter Shay had a rare and undiagnosed form of epilepsy which motivated Dr. Hammer to conduct a genetic analysis of Shay and the family’s genome. While Shay passed before the search was complete, Dr. Hammer persisted and was the first to identify SCN8A as a distinct genetic cause of a rare but often catastrophic epilepsy. Since the discovery, Dr. Hammer has devoted his energies and personal resources toward the development of the dedicated SCN8A registry, conducting research, and supporting SCN8A families. He is the Director of the University of Arizona Genetics Core (UAGC) and co-director of the UACC Genomics Shared Resource.
View a video about Dr. Hammer identifying the SCN8A gene: The Gene Detective’s Journey
JayEtta Hecker, MS
Executive Director and co-founder of the International SCN8A Alliance and co-founder of Wishes for Elliott. JayEtta is an economist who specialized in independent public policy analyses and held several positions with the National Academy of Sciences.
JayEtta trained and served in multiple federal agencies, including 25 years with the Congressional research arm, the Government Accountability Office. Elliott was her first grandchild and she was an active caregiver and partner in his diagnostic odyssey. She partnered with Gabi, her daughter, to form Wishes for Elliott to advance SCN8A research and create a lasting legacy for Elliott, who continues to serve as an inspiration with his pure love, connection, resilience, and joy.
Kristi Stimac, MA/Education
Kristi Stimac serves as the Clinical Family Coordinator for the International SCN8A Registry and family networks of the International SCN8A Alliance. She brings over a decade of experience as an effective Program Development and Recruitment Specialist in both the education and private sector. As a parent to Charlotte, who has an SCN8A mutation, Kristi has a deep commitment to supporting SCN8A families with a focus on community, communication, and results.
Andraé Jones is the CEO of Octavia, a multimedia marketing firm, and the host of All About the Win Podcast. Octavia specializes in designing and developing engaging Content Marketing, Social Media Marketing, and Video Production by combining storytelling and marketing strategy to ensure customers will Grow Their Brand and Empower Their Business! Andrae brings the urgency and compassion of advocating for rare diseases from his engagement supporting his beloved sister who struggled with a rare and catastrophic disorder.
Ben Lopez is the COO of Operations, Project Manager, and Web Developer for Octavia. He is a graduate of the University of Arizona, receiving a Bachelor of Arts degree in Information Science, Technology and Arts, with a minor in Management. When not glued to a computer he enjoys spending time playing video games, watching movies and sports like football and basketball, and learning additional coding languages.
Marga is an Employer Branding and Talent Attraction specialist with experience in managing agencies and campaigns. Her background in brand strategy, visual & graphic design and project management help her play an ongoing role in helping the SCN8A Alliance present an attractive and consistent presence across channels.
Scientific Communications Specialist
Sara Te is an MPH candidate at Boston University focusing on global health program design, monitoring, and evaluation. She recently graduated from the University of Arizona with a BS in Microbiology and a BS in Care, Health, and Society with a minor in Molecular and Cellular Biology. She is also a Certified Community Health Specialist. She has worked in a pharmaceutical science lab studying protein purification as well as clinics as a medical scribe in various specialties such as pediatrics, family medicine, cardiothoracic surgery, sports medicine, and ophthalmology. Sara has experience in scientific communication and mentoring high school STEM students. She hopes to pursue a career in the non-profit sphere as an infectious disease program manager. When she is not studying, you will most likely find her reading a variety of fictional books at a nearby coffee shop.
Akansha Urmaliya, MBA, SHRM-CP
Human Resources Consultant
Akansha has a Masters in Business Administration and is a SHRM certified human resources professional specializing in planning, implementing and directing HR policies and procedures. She has experience in recruitment, employee relations and HR analytics. Her HR background helps her play an ongoing role in helping the International SCN8A Alliance build stonger systems and maintain compliance. In her spare time, she enjoys singing, painting, traveling, cooking and helping her community.
Shay Emma Hammer
Shay began her fight with epilepsy when she had her first seizure at six months of age. Her parents knew something wasn’t right when they noticed that her eyelids flickered and her hands trembled many times a day. Though Shay finally had a general diagnosis, her specific symptoms and development were not typical to any existing or known forms of epilepsy. The cause of it all was still a mystery.
In search of a possible genetic cause of Shay’s epilepsy, Dr. Hammer sought and received approval to conduct a comprehensive genetic study of both Shay and the family. Shay became the first person ever diagnosed with SCN8A epilepsy.
While she was alive Shay inspired her family and caregivers, and because of her, families, clinicians and researchers now know so much more about this devastating brain disease. Now, because of Shay, families around the world with a child that is affected by an SCN8A- related disorder have the opportunity to learn more and connect to each other.
Elliott Lyndon Conecker
Elliott has always been a smiling and cheerful little boy but suffered early on from intractable seizures and global developmental delays. Through repeated hospitalizations, including many intubations and code emergencies, Elliott has revealed a persistent fight to survive and return home to his best friend , sister Vega, and his devoted and playful parents. Elliott, now 10 years old, never met a single milestone, although he both gives and receives abiding love and connection. His resilience, hopefulness, trust, and love of his family inspire us every day. While we reflect on what a rich person might emerge should the cloud of his refractory seizures and excessive mood-altering drugs be removed, he is deeply cherished and loved – and an inspiration – just the way he is.