Bizim haqqımızda

DEE-P Connections is a global, parent-led organization supporting families affected by developmental and epileptic encephalopathies (DEE) through trusted resources, education, and advocacy. We unite families, experts, and partner organizations worldwide to improve quality of life and accelerate progress toward better care and treatments.

Leadership Team

Gabi Conecker, MPH

Beynəlxalq SCN8A Alyansının, DEE-P Connections və The Inchstone Layihəsinin prezidenti və həmtəsisçisi

Gabi is mom to Elliott, now 13 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.

haqqında videoya baxın Elliott üçün arzular adlı ilkin fondunu yaratmaq qərarına gəldi.

View Gabi's Bio

JayEtta Hecker, MS

İdarə Heyətinin Sədri və Beynəlxalq SCN8A Alyansının, DEE-P Connections və The Inchstone Layihəsinin həmtəsisçisi. JayEtta müstəqil dövlət siyasəti təhlili üzrə ixtisaslaşmış iqtisadçıdır və Milli Elmlər Akademiyasında bir sıra vəzifələrdə çalışıb.

JayEtta bir çox federal qurumlarda, o cümlədən 25 il Konqresin tədqiqat qolu olan Hökumət Hesabatlılığı İdarəsində təlim keçmiş və xidmət etmişdir. Elliott onun ilk nəvəsi idi və o, onun diaqnostik odisseyində fəal baxıcı və tərəfdaş idi. O, SCN8A tədqiqatını inkişaf etdirmək və saf sevgisi, əlaqəsi, möhkəmliyi və sevinci ilə ilham mənbəyi kimi xidmət etməyə davam edən Elliott üçün qalıcı bir miras yaratmaq üçün Elliott üçün arzular yaratmaq üçün qızı Gabi ilə əməkdaşlıq etdi.

View JayEtta's Bio

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.

Kelly Muzyczka, PhD

Executive Deputy Director of the International SCN8A Alliance, DEE-P Connections, and The Inchstone Project.

Kelly is a social scientist with a focus on health equity, data science, and social networks. She has extensive experience making data relatable and maximizing presentation to ensure accessibility across a wide range of backgrounds and needs.

View Kelly's Bio

Gabby Sarlo, PhD

Program Director & Lead Scientist

Gabby Sarlo is a clinical neuroscientist with seven years of experience in pediatric epilepsy, contributing through research, scientific program leadership, and science policy engagement. She is committed to translating complex science into clear, accessible information for researchers, clinicians, and families.

View Gabby's Bio

Staff

Şennon Qvardiola

DEE-P Connections Community Outreach

Natalia Nariño, MA

DDE Program Manager

Natalia is a Program Manager with 10+ years of experience designing and implementing complex, multi-program portfolios in mission-driven environments.

View Natalia's Bio

Caragh Maloney

Communications Intern

Caragh is a DDE Intern and a senior at the University of Connecticut, where she recently graduated with her degree in English.

View Caragh's Bio

Board of Directors

JayEtta Hecker

Board Chair

Read JayEtta's bio above in the leadership team section.

Juliane Mills, MPH

Vice Chair & Governance Committee Chair

Juliane Mills is a rare disease clinical and therapeutic strategy leader with more than 20 years of experience across research and global drug development. Her work focuses on building strong partnerships between patient advocacy groups and industry to advance patient-centered clinical research in complex and underserved conditions.

View Juliane's Bio

Juliane Mills is a rare disease clinical and therapeutic strategy leader with more than two decades of experience spanning laboratory science, clinical research, and global drug development. She currently serves as Executive Director of Therapeutic Strategy for Rare Disease and Real-World Evidence at Worldwide Clinical Trials, where she partners with biopharma and advocacy stakeholders to advance development programs across complex and underserved conditions.

Throughout her career, Juliane has held senior roles in scientific affairs, clinical operations, and therapeutic strategy at organizations including ICON, PRA Health Sciences, United BioSource Corporation, Centocor, and DuPont Pharmaceuticals. Her work has supported programs from early development through late-stage clinical trials, with deep expertise in rare disease trial design, regulatory strategy, endpoint development, and Good Clinical Practice. She has also served as a science consultant to the Chan Zuckerberg Initiative, contributing to initiatives aimed at accelerating biomedical research and collaboration.

Juliane holds a Master of Science in Public Health and a Master of Science in Science Communication. She is deeply committed to strengthening collaboration between patient advocacy organizations, researchers, and industry, with a focus on elevating caregiver and patient priorities in drug development. As a member of the Board of Directors, she brings strategic insight, cross-sector perspective, and a strong commitment to advancing meaningful, patient-centered research for developmental and epileptic encephalopathies.

Anne Thompson Heller, PhD, LMFT

Secretary

Anne holds a PhD in human development and family sciences and has worked in research, clinical care, and policy focused on health and wellbeing. She is also the mother of a child with DEE, bringing lived experience to her commitment to supporting families.

View Anne's Bio

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 daughter Jordan, 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.

Brian Pfister

Fundraising Committee Chair

Brian is a pharmaceutical and biotechnology executive with nearly 30 years of experience in epilepsy and rare neurological disorders. His work is shaped by both industry leadership and his experience as a parent of a child with epilepsy.

View Brian's Bio

Ariel Gibbons

Treasurer (Acting)

Ariel is an educator with a deeply personal connection to SCN8A and is dedicated to supporting families with SCN8A and DEEs. Her work focuses on strategic communications and board advocacy.

View Ariel's Bio

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.

Michael Halpern

Michael Halpern is a science and technology policy leader with more than 20 years of experience advancing mission-driven programs across healthcare, government, and advocacy organizations. His work focuses on strategic communications, movement building, and integrating scientific evidence into effective public policy.

View Michael's Bio

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.

Ryan Ruggiero

Treasurer

Ryan Ruggiero is a finance leader with more than a decade of experience helping organizations improve financial visibility, strengthen operating discipline, and navigate complex business decisions. His background combines experience operating within the complexity of a Fortune 100 company with executive finance leadership in smaller company environments.

View Ryan's Bio

Across his career, Ryan has led and supported work across financial planning and analysis, strategic finance, cash forecasting, working capital management, cost structure improvement, board reporting, banking relationships, and cross-functional business partnership. He has partnered with executive teams, boards, lenders, and operational leaders to support sustainable decision-making and improve organizational performance.

Ryan holds an MBA with a concentration in Strategy and Finance from the University of Minnesota Carlson School of Management, as well as a master’s degree in accounting. He is also the father of a daughter diagnosed with an SCN8A-related developmental and epileptic encephalopathy, giving him a deeply personal connection to the rare epilepsy community. As Treasurer and a member of the Board of Directors, Ryan brings financial stewardship, strategic operating experience, and a caregiver’s perspective to Decoding Developmental Epilepsies. He is committed to supporting the organization’s mission to advance research, improve collaboration, and help create a more hopeful future for children and families affected by developmental and epileptic encephalopathies.

Chris Breder

Treasurer (Acting)

Christopher D. Breder, MD, PhD is a physician-scientist with extensive experience in both the pharmaceutical industry and the U.S. Food and Drug Administration (FDA). As a former FDA Medical Officer and Lead Medical Officer, he contributed to the review of numerous INDs and multiple NDA/BLA approvals across neurology, anesthesiology, and rare diseases.

View Chris's Bio

In industry, he has served in senior clinical development leadership roles at Sunovion, Supernus, and Bristol Myers Squibb, and now consults widely across biotech, investment, and legal sectors. Dr. Breder brings deep expertise in clinical trial design, regulatory strategy, safety assessment, and product development from early-stage programs through approval, and into life cycle management. He has been involved in 18 approvals and major labeling changes, including 2 anti-epileptic drugs.

Inna Hughes

Inna Hughes, MD, PhD, is an Associate Professor of Child Neurology and Epilepsy at the University of Rochester, in Rochester, NY. Her clinical interests in pediatric epilepsy focus on the care of patients with developmental epileptic encephalopathies.

View Inna's Bio

Dr. Hughes completed undergraduate at Williams College and graduated from Washington University in St Louis School of Medicine from the combined MD, PhD program in Developmental Biology. She completed her Child Neurology residency training and a Pediatric Epilepsy fellowship at the UofR. She is currently serving as the Chief of the Pediatric Epilepsy and the Interim Chief of the Child Neurology Divisions. Her clinically focused academic interests include the genetics of childhood onset epilepsy syndromes, dietary therapy in children and teens, transition of care for young adults with epilepsy, and development of teaching and community programs to improve education and awareness for patients with epilepsy.