Meet The Team

Leadership Team

Dedicated to supporting SCN8A families and advancing research, our team strives to improve the quality of life for those affected by this rare disorder. Comprised of passionate and devoted individuals, we are committed to the relentless pursuit of a cure for this challenging condition. #CollaboratingForACure

Leadership Team

Gabi Conecker, MPH​

Gabi Conecker, MPH​

Executive Director &
Co-founder

Executive Director and Co-founder of the International SCN8A Alliance, founder and President of Wishes for Elliott; since 2014, dedicated to advancing SCN8A research. Gabi has a nearly 20 years experience in advocating for and advancing public health.

Gabi earned her Master of Public Health (MPH) from Columbia University’s Mailman School of Public Health in 2007. Her professional acumen is further accredited with a PMD Pro program management certification, reflecting her capability to lead complex projects to success.

In the SCN8A community, Gabi is a force for change, channeling her extensive experience and strategic thinking into action against SCN8A-related disorders and DEEs. Gabi is the mother of Elliott, who faces a severe SCN8A-related Severe Developmental and Epileptic Encephalopathy. Her focus is on driving impactful change, focusing research, galvanizing the medical community behind a unified plan of action, and relentlessly advocating for transformative care and treatments that bring improving quality of life to those with SCN8A and DEEs.

Michael Hammer, PhD

Michael Hammer, PhD

Geneticist, Registry Lead &
Co-founder

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​

JayEtta Hecker, MS​

Board Chair &
Co-founder

Board Chair and Co-founder of the International SCN8A Alliance and 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 is a formidable advocate in the fight against SCN8A and developmental and epileptic encephalopathies. Her journey into SCN8A and DEE advocacy is deeply personal, driven by her connection to the cause as the mother of Gabi Conecker, the Executive Director, and grandmother to Elliott, who has SCN8A and Severe DEE. 

JayEtta had an illustrious career as an economist and policy analyst. She held key positions with the National Academy of Sciences and contributed 25 years to the Government Accountability Office, the Congressional research arm. Her work in public policy analysis and her numerous testimonies before Congress have laid a solid foundation for her current advocacy, allowing her to navigate and influence the complex landscape of medical research and healthcare policy.

Support Staff

Dianne Mitchell, PhD

Dianne Mitchell, PhD

Scientific Advisor

Dianne is an esteemed PhD-level scientist with a robust background in bioanalytical development and DNA sequencing. Her extensive experience, including founding a clinical diagnostics company and managing genomics laboratories, makes her an invaluable scientific advisor to our SCN8A initiatives. With a deep understanding of genetics and a history in cancer drug development, Dianne’s insights and advice significantly enhance our efforts to advance SCN8A research.

Ayana'a Sudduth

Ayana'a Sudduth

Communications Coordinator

Ayana’a is currently an MPH candidate at Boston University School of Public Health and is focused on earning certificates in Biostatistics/Epidemiology and Global Health Program Design, Monitoring, and Evaluation. With a solid foundation in research and analytics, she aspires to contribute significantly to clinical research opportunities. She is particularly passionate about addressing racial and ethnic disparities in the healthcare system and is committed to effecting change through informed research and impactful health strategies.

Charles Anderson

Charles Anderson

Information Technology

Charles has over two decades of IT expertise working with large enterprises, government agencies, and countless small to medium-sized businesses across sectors including healthcare. His heartfelt advocacy combined with his ability to navigate complex IT landscapes makes him a key contributor to advancing our mission of improved quality of life for those affected by SCN8A.

Board of Directors

Decoding Developmental Epilepsies is the umbrella organization behind both the International SCN8A Alliance and DEE-P Connections which runs The Inchstone Project. All entities share the same dedicated Board of Directors, ensuring a unified approach in our mission to support, advocate, and advance research in SCN8A and developmental epilepsies. Whether you engage with us through DDE, the International SCN8A Alliance, or DEE-P Connections, you are connecting with one committed team working towards improved quality of life for those with SCN8A and DEEs.

JayEtta Hecker, MS

JayEtta Hecker, MS

Board Chair and Co-founder of the International SCN8A Alliance and 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 is a formidable advocate in the fight against SCN8A and developmental and epileptic encephalopathies. Her journey into SCN8A and DEE advocacy is deeply personal, driven by her connection to the cause as the mother of Gabi Conecker, the Executive Director, and grandmother to Elliott, who has SCN8A and Severe DEE. 

JayEtta had an illustrious career as an economist and policy analyst. She held key positions with the National Academy of Sciences and contributed 25 years to the Government Accountability Office, the Congressional research arm. Her work in public policy analysis and her numerous testimonies before Congress have laid a solid foundation for her current advocacy, allowing her to navigate and influence the complex landscape of medical research and healthcare policy.

Michael Hammer, PhD

Michael Hammer, PhD

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

Madeleine Oudin, PhD

Madeleine Oudin, PhD

Madeleine is a Principal Investigator and Associate Professor of Biomedical Engineering at Tufts University. She has a Ph.D. in Neuroscience from King’s College London with postdoctoral work at MIT Koch Institute for Integrative Cancer Research. Her research is propelled by a dedication to treating neurological disorders, notably SCN8A encephalopathy affecting her daughter Margot. Her lab explores alternative splicing of sodium channels and neuronal function to develop therapies for epilepsy and neurodevelopmental disorders. The Oudin Lab (MadeleineOudinLab.com) also focuses on cancer metastasis and drug resistance, examining tumor microenvironments and the extracellular matrix’s role in cancer invasion and chemotherapy resistance. Additionally, it studies neuronal properties of tumors, including nerves that innervate them and cancer cells’ neuronal behaviors. Dr. Oudin’s work draws parallels between cancer biology and neurodevelopment, investigating axon guidance genes and bioelectrical properties of tumor cells to understand and treat cancer and epilepsy.

Nabeel Miskeenyar

Nabeel Miskeenyar

Nabeel is a seasoned finance professional with over a decade of experience in various international organizations, including donor agencies like USAID, European Commission, international NGOs, and UN agencies. With expertise in finance, procurement, accounting, and audit, Mohammad has successfully managed projects funded by diverse entities such as USG, UN, WB, European donors, and BMGF. His global perspective is enriched by working backgrounds in the US, Eastern Africa, South Asia, and field experience in Afghanistan. Fluent in multiple languages and deeply committed to his work, Mohammad’s broad experience and keen analytical skills make him a vital asset to any team focused on creating meaningful change in international and finance sectors.

Anne Thompson Heller

Anne Thompson Heller

Anne is a respected professional in the field of human development and family sciences, with a Ph.D. from the University of Connecticut. Her academic work focuses on health and wellbeing, particularly in the context of collegiate recovery programs. She has applied her expertise as a Licensed Marriage and Family Therapist to provide supportive mental health services and contribute to policy development at the University of Connecticut.

In her personal life, Anne is a dedicated mother to her son, Miles, who has DEE, giving her a deeply personal connection to the condition. Her professional pursuits are informed and enriched by her firsthand experiences, driving her commitment to support and advocate for families navigating similar challenges.

Ariel Gibbons

Ariel Gibbons

Ariel Gibbons has over 15 years experience as an educator. Ariel’s expertise and dedication shine in her advocacy for inclusive education.

Her passion for education extends beyond the classroom, as she holds a master’s degree in ESL and Special Education and K-12 education.

Her commitment to the International SCN8A Alliance exemplifies her dedication to making a difference in the lives of those affected by SCN8A and DEEs.

Mandy Mills

Mandy Mills

Mandy  has a background in journalism and a notable career as an Executive Vice President with Compass Real Estate, she brings a unique perspective to the team, emphasizing the importance of clear communication, community engagement, and strategic development. Mandy’s dedication to supporting local nonprofits and her intuitive understanding of people’s needs enrich her contributions to the Alliance, focusing on creating a supportive network for SCN8A families and fostering advancements in research. Her involvement underscores her deep desire to making a meaningful difference for SCN8A and DEE families.

Michael Halpern

Michael Halpern

Michael is a dedicated Science & Technology Policy Program Director with a rich background spanning over two decades. Known for his strategic leadership and commitment to integrating science in policy-making, Michael has steered significant initiatives across healthcare, government, and various sectors. He is passionate about advancing scientific integrity and fostering collaborative solutions to complex challenges. With a knack for communication and innovation, Michael is a respected figure in science policy, continually working to ensure that scientific insights lead to positive societal impact.

 
Eric Wengert

Eric Wengert

Dr. Eric R. Wengert, Ph.D., is a distinguished Postdoctoral Fellow at the Children’s Hospital of Philadelphia under the mentorship of Ethan M. Goldberg, MD, Ph.D. His scholarly journey began with a B.S. in Neuroscience from Bucknell University, culminating in a Ph.D. in Neuroscience from the University of Virginia, where he explored the “Mechanisms and Treatment of SCN8A Epileptic Encephalopathy.” Dr. Wengert’s work is recognized through prestigious fellowships and scholarships, including the F31 Ruth L. Kirschstein National Research Service Award, showcasing his dedication to advancing the understanding and treatment of neurological disorders. His commitment extends into the community as a board member of the International SCN8A Alliance, where he utilizes his passion for ensuring scientific information can be understood to all. Dr. Wengert’s significant academic and research accomplishments underscore his commitment to neuroscience and his continuous efforts to enhance the lives of those affected by neurological conditions.

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.

Andrae Jones

Communications Consultant

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

Web Developer

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 Laurel

Design Consultant

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.

Sara Te

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.

 

Our Inspiration

Shay Emma Hammer

Shay's Story

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's Story

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 11 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.

Click HERE for more information on the formation of the new International SCN8Alliance

Click Below for Annual Reports of Wishes for Elliott

2020
2019

Click HERE for more information about the Shay Emma Hammer Foundation

How You Can Help

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